What It’s Like to Have Auditory Processing Disorder, As Illustrated By Auto-Generated YouTube Captions

Like a lot of people with ADHD, I also have central auditory processing disorder.

CAPD manifests as a problem understanding speech and other sounds. It isn’t a hearing problem per se: The structures of the ear work just fine to capture sound waves and transmit them as electrical impulses to the brain. The brain, however, struggles to interpret these electrical impulses effectively.

People with CAPD frequently have trouble understanding what’s being said to them, especially if the sound of the speaker is in any way distorted (phone lines, VoIP), interrupted (conversations in noisy restaurants), or intruding upon a preexisting focus (someone trying to talk to you while you’re concentrating).

Most folks with CAPD identify heavily with this exchange:

Them: Can you hand me the remote?
You: What?
Them: Can you hand m-
You: Oh, sure. *passes remote*

It’s not that we didn’t hear the first “can you hand me the remote?”, per se. It’s that our brains lag translate it into a comprehensible statement. We know we were asked something (hence “What?”), but it takes extra time for us to realize what the something was.

And we very often get it wrong. “Can you hand me the remote?” could just as easily be interpreted by our brains as “Canoe slappy boat,” or as sounds that don’t register as language at all. (“Canoe slappy boat” is very likely because our brains will try to make sense of the sound input we just got, and “canoe” and “boat” are related words.)

capd

When Captions Fail

Like a lot of people with CAPD, I watch television with the captions on. Captions help my brain keep up with what’s being said by giving me an insta-check on what I thought I heard.

Usually.

Auto-generated captions, created by algorithm, are increasingly popular – particularly on sites like YouTube, where captioning everything uploaded in one minute would take over 300 years if done by humans.

The accuracy of YouTube’s auto-generated caption algorithm appears to depend on many of the same factors that affect the accuracy of comprehension in CAPD. For instance, auto-generated captions over a single speaker enunciating clearly into a microphone in an otherwise silent space are generally accurate. Auto-generated captions over a musical track or with significant background noise are often not.

Sometimes, however, the speech seems clear but the auto-generated captions really fail. And in one particular instance, the failures looked almost exactly like what my brain “hears” through the filter of CAPD.

Strength of the Algorithm: Auto-Captioning Fails in BraveStarr

BraveStarr ran for one season, in 1987-88. The show was Filmation’s last animated series (He-Man and She-Ra having both been pulled the year before). It has a lot of the hallmarkes of a Filmation piece – especially the presence of nearly-incomprehensible characters and the use of the same five voice actors for nearly every character.

Here’s what it’s like to hear through CAPD. (The first two examples are from the episode “Unsung Hero.” The rest are from “An Older Hand.”)

Unsung Hero

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YouTube/My Brain: “…interested in in mining carrion no one wants to be a pot farmer imprudent….”

The Actual Line: “…interested in mining Keriam. No one wants to be a pod farmer, including [my son].”

This was the first screenshot I grabbed. At the time, I was merely amused at the “pot farmer” part of the joke.

Then things got even more inappropriate:

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YouTube/My Brain: “you all right I think so oh but your whoreson stolen”

The Actual Line: “You all right? I think so. Oh, but your horse was stolen!”

CAPD makes my brain translate ordinary sentences into potentially offensive ones all the time. I don’t even comment on it anymore.

(Given that the brain tries to fit sound into a pattern with which it’s already familiar, this might say more about the frequency with which I hear and use profanity than it does about CAPD.)

Typically, YouTube’s auto-caption generator doesn’t trip much on human characters’ lines. The humans characters’ voice actors tend to deliver these lines straight; they save accents, funny voices, etc. for non-human characters. The algorithms’ ability to handle non-human characters’ lines ranges from “bad” to “nonexistent.”

An Older Hand

All of these examples contain lines delivered by various Prairie People.

Normally, YouTube’s auto-generated captions don’t interpret the Prairie People’s voices as speech at all. Captions simply aren’t generated when Prairie People are speaking.

In this episode, however, the algorithm recognized when Prairie People characters were speaking most of the time. But it struggled with what they were saying – in a way very similar to my own brain’s struggles.

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My Brain/YouTube: “bigger you might be you maybe not Maggie what’s your work being a good screen”

The Actual Line: “Whoa. Maybe not magic, but still work pretty good.” [scene change] “BraveStarr….”

Like a lot of things I hear with CAPD, this caption makes no literal sense. Those are words, but they cannot possibly be the words the speaker actually said – can they?

This caption also carries over lines from a previous character/scene into the new one, where it mashes them together with the start of a line delivered by a character in this scene. It’s not unlike having to listen to someone speak in a noisy restaurant or bar: My brain doesn’t always distinguish between “what this person is saying” and “what someone else in the room said.”

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YouTube/My Brain: “real that really be young bad guy a riot you’ll never did stop believin”

The Actual Line: “Well, that’s where it belong, by golly wollies.” “You never did stop believing….”

I didn’t expect YouTube to get “by golly wollies” on the first try (or ever). But idiolectic details like “by golly wollies” can make the comprehension process even harder. Until I’m aware that the person will frequently do things like interject “by golly wollies” or pronounce “washing” with an “r,” my brain won’t account for them in processing – so I’ll struggle even more to understand the speaker.

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YouTube/My Brain: “you know you lose your hoop boys always believing you but it more potent”

The Actual Line: “No sir, Fuzz always believe in you. But it more important….”

This line almost made me wish YouTube had not started picking up on the Prairie People’s speech as speech. I’ve watched enough Fuzz episodes to understand him (on a 2-3 second delay), but the captions here actually made matters a lot worse.

This is also a good example of how non-spoken sounds will get interpreted by a CAPD brain as speech. “No sir, Fuzz” became “you know you lose your hoop boys” due to background non-speech noises in the actual scene.

It’s not that people with CAPD aren’t listening to you. It’s that what you said + all the sounds around it = “you know you lose your hoop boys.” You’d say “What?!” too.

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YouTube/My Brain: “karyam I’m as powerful as she wore brave stars under stick”

The Actual Line: “…Keriam. I’m as powerful as you are, BraveStarr! ThunderStick….”

YouTube’s lack of punctuation in auto-generated captions illustrates another common pitfall for those of us with CAPD: We don’t always “hear” where punctuation fits into spoken language.

For instance, this joke is typically presented in written form:

Let’s eat grandma!

Let’s eat, grandma!

Commas save lives.

When spoken, there’s typically a change in pace and pitch that indicates the relationship between “eat” and “grandma” that the comma encodes in writing. Here’s a bad attempt to draw it:

lets eat grandma

People without CAPD can hear the change in pace and pitch that indicates whether “let’s eat” is a comment made to grandma (let’s eat, grandma!) or if grandma is the object to be eaten (let’s eat grandma).

With CAPD, the brain doesn’t always process pace and pitch, either. So even if we understand the words “let’s,” “eat,” and “grandma,” we may not know whether the speaker is proposing to grandma that we eat… or proposing we eat grandma.

This auto-generated caption mistake crams together parts of three separate sentences, each of which include one name (“Keriam,” “BraveStarr,” “ThunderStick”). The combination of proper names and lack of punctuation further confuses the meaning, both in the caption and in hearing with CAPD.

What’s the Point of All This?

I started collecting auto-caption BraveStarr mishaps because they were funny. I still giggle at “no one wants to be a pot farmer.”

But they also turn out to be great examples of how my brain mishears things.

Living with CAPD can be tough, especially when you go undiagnosed for decades (as I did). With CAPD, people assuming you’re deaf or hard of hearing is the good outcome. They’re more likely to assume you’re rude or lazy, especially if they know you well enough to know you can hear.

To complicate matters, CAPD often rides along with neurodivergences that make people more sensitive to sound, like autism and ADHD. It’s not uncommon for children with CAPD to get hearing tests that report their hearing is, if anything, too good. It’s not enough to test hearing – you also need to test processing, or what happens once the sound gets from the ear into the brain.

Normally, I’m not a fan of disability simulations. These auto-generated captions, however, failed in a way so completely similar to what I hear, and for so many of the same reasons, that they offer the closest thing I’ve yet found to actually having CAPD.

So the next time someone who seems to hear perfectly well asks “What?”, just assume they heard you say “you know you lose your hoop boys” – and that they respect you enough not to write you off as really spouting gibberish.


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Autistic Community, Crabs and the State of My Cardiovascular Health

A friend of mine recently posted a tongue-in-cheek list of the various stages of autistic advocacy. The penultimate stage was “I am avoiding my own community for the sake of my cardiovascular health.”

In my case, it’s funny because it’s true.

I made the decisions to step away from the autistic activist community about a year ago. In that time, I’ve gained some perspective on why I made that choice – and why the number of us avoiding our own community for health reasons keeps increasing.

crabs a year later

1. Teaching 101 classes is exhausting.

My friend’s tongue-in-cheek first stage was utter outrage at regularly recurring events – in this case, at the autistic character cast as a puppet in the stage play All in a Row. A fair number of the responses to said puppet can be summarized as “Nothing this outrageous has happened to us in the history of humanity!”

It has, of course. Dehumanizing portrayals of autistic people in media are ancient hat. They’ve been deconstructed over and over again by members of the community and by allies.

When I started writing on autism, I did so optimistically and enthusiastically. Here was a field in which so much work hadn’t been done, and I was convinced that my doing it would lend itself to genuine progress.

I overestimated how quickly change occurs. But I also overestimated the extent to which my own community would orient itself to its own body of work.

Today, there are dozens of masterposts on nearly every autism-related topic imaginable. A Google search for “autism masterpost” turns up literally dozens, on topics ranging from autistic vocabulary to ABA to how to write fictional autistic characters.

I appreciate people who donate their time and effort to compiling resources. Masterposts are a lot of work. Academic journal articles are a lot of work. In-depth discussions of any topic are work. I know, I’ve written them.

I am not a fan of repeated 101 requests from folks who clearly haven’t Googled – they just perceive me standing there and demand I answer their questions. And it happens a lot.

I have trouble faulting neurotypical people for it anymore when the autistic community has been an equal source of culprits.

2. Trauma is a reason but not an excuse.

Autistic people are, on the whole, a traumatized bunch – and for good reason. We’re born into a world that isn’t designed for our neurology (in fact, it often seems designed to exacerbate our discomfort), and we’re expected to figure out how to survive in it, often while being “treated” with methods that directly impair our survival skills.

So when we first find Autistic community, our trauma often spills over. Which makes sense! For the first time in our lives, we’re surrounded by people who get it! Who have been through similarly traumatizing experiences! Who can affirm that yes, that was traumatizing and you are not weird, bad, weak or wrong for experiencing it as traumatic!

…The problem, which not all autistic people manage to avoid, is that having that trauma affirmed can feel like sufficient reason to avoid the hard work of processing it.

The result are members of the community who do things like:

  • Demand that others mediate their trauma. Seeking help once or twice in a particularly bad situation isn’t a problem; it’s the folks who demand others pay attention to their problems multiple times a day.
  • Maintain that they’re constantly the target of persecution – a stance that gets even more damaging once the person starts accumulating flying monkeys.
  • Develop a sense of entitlement to autistic-run spaces, resources and platforms.

The longer one processes one’s own trauma, the more clearly these patterns emerge, and the easier it becomes to distinguish people who are working on their demons and people who aren’t. It’s easier to see the cost in fucks that the latter impose on the community as a whole – and to go bankrupt.

Trauma explains a lot of these approaches and attitudes. But it does not excuse them.

3. It only took a few people to ruin me for the rest of you.

There’s a version of the trauma/persecution problem that leads to a profound sense of entitlement to autistic-run spaces, resources, and platforms. The rest of the world is against “us” but these things are “us,” so why can’t I just take them? It’s for the good of the community!

I have seen this dynamic play out several times in the handful of years I’ve occupied Autistic spaces.

I’ve seen autistic students blithely poach the work of autistic scholars and pass it off as their own.

I’ve had to file C&Ds as autistic bloggers have reprinted my writing wholesale on their blogs, then dragged me for having the audacity to ask them to stop profiting off my work – or even for asking to be cited as its author.

I’ve seen autistic authors and artists leave the community entirely, pulling all their own work from publication, after being worked to the point of total disability by another autistic person who had an idea but demanded everybody else put in the effort to realize it.

I’ve been publicly dragged by an autistic activist, along with everyone else at Autonomous Press, based on mere hearsay that the activist’s work might not be automatically accepted for publication, and I’ve seen dozens of other community members take that activist’s side without even asking for clarification.

I’ve had autistic writers throw fits in my AutPress email at the news that we do not, in fact, auto-publish your work because you tell us you’re autistic.

There is a small but incredibly loud contingent of the Autistic community that treats the work of other autistic people as theirs for the taking. But when we’re talking about such labor-intensive tasks as writing academic articles, maintaining a blog, or starting an entire publishing company, it only takes a few of these people to burn out and destroy the very resources they’re trying to leverage.

4. Boundaries remain a problem.

Building culture is an exhilarating thing. But without boundaries, culture-building can easily suck you dry. And the same people who insist that your boundaries are hurting them will tell you your inevitable collapse was all your fault for not having boundaries in the first place.

This is the lesson on boundaries a lot of autistic people grew up hearing, especially if we were subjected to ABA or equivalent “therapy.” When you learn very early in life, upon threat of survival, that you are not allowed to have boundaries, acting as if you have none is a very difficult behavior to uproot. For many autistic people, it’s made worse by our own overweening empathy. We want to help, and we have never been taught how to do so without killing ourselves.

Unhealthy behaviors around boundaries are rife in the Autistic community. They’re difficult to uproot. They keep reasserting themselves in different forms throughout our lives without a consistent and dedicated effort to their eradication. And mental health treatment being what it is(n’t), many of us never learn effective tools to combat them.

Boundaries are a huge deal in the Autistic community precisely because we don’t have enough of them. We have a lot of people without them, a lot who drop them because “I found my people so I don’t need boundaries!”, and many who ignore them out of a desire to help, save and protect others from the same trauma they themselves suffered.

As a result, having boundaries can open one up to excoriation in Autistic spaces. I’ve been rebuked for it more than once. How dare I not drop everything and help (with a project, with trauma, with repeating for the 500th time to some parent on Facebook that vaccines do not cause autism) right now (and always, always for free)?! You’re just as bad as the neurotypicals!

There’s a reason the final stage of autistic activism is “lol puppetize me already, maybe I’ll find the energy to fight this shit with a hand up my ass.”

There are extraordinary people in the autistic community. I’ve found lifelong friends, family, colleagues and mentors here. But those relationships only grow when everyone involved in them maintains a commitment to listening, learning, growth, balance, and boundaries.

Without them, this community will continue to burn out its own members, and both its activism and its culture will suffer.

Study: 1 in 40 Autistic People Surprised You’re Surprised That 1 in 40 People are Autistic

A study announcing that the autism rate among children has risen to 1 in 40, higher than the 1 in 58 previously estimated by the CDC, is making headlines. Despite the fact that the study authors themselves admitted they were not surprised (a South Korean study put the number at 1 in 38), we’re seeing the usual uptick in “crisis” rhetoric, along with the usual new spate of bizarre woo-based memes.

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Chicken Little.

Since leaving activism several months ago, I’ve scarcely kept up with autism news and I’ve commented on autism-related subjects even less. This one, however, stands out to me because of its parallels with a Quora A2A I received a few days ago: “Have you ever shared a bathroom with a transwoman [sic] and what happened?”

The answer to this question is, of course, “I have been in a public bathroom with a trans person before and so have you, and neither of us probably realized it at the time.” Trans people make up 0.6 to 1 percent of the U.S. population, after all. That’s about two million people. Evenly divided by state (which the population overall is not, so neither are trans people), that’s 40,000 trans people per state, or an entire Big Ten university.

The response to the Chicken Littles scurrying in response to the study results is the same: “Autistic people have always made up about 2.5 percent of the population, you just didn’t realize it before now.” That’s about 8 million autistic people, or about 160,000 per state – a midsize metropolitan area.

Natural redheads, incidentally, also make up about 2 percent of the U.S. population. Have you met more than one natural redhead in your life? Statistically, you’ve met that many autistic people as well.

Of course, this answer seems to placate no one. In fact, it most often appears to entrench the speaker further in their anxiety that Things Are Getting Worse All The Time.

Granted, “things have actually been as bad as you think for a while now” isn’t exactly comfort food. For someone whose anxiety is driven by a sense of lost control, “it’s been out of control” doesn’t help and can actually make the anxiety worse.

And questions like “why are all the kids turning autistic?!” or “are there trans people in our bathrooms?!” are very much about a sense of lost control. Autistic people and trans people are seen as threats because of their status as Other. When more of those scary Others start to pop up, many people experience a sense of disturbance to their internal order, their sense of how things should be: Men are men, women are women, everyone communicates in a certain way, and all is right with the world.

Reminders that the world has never actually been that way aren’t great. In fact, they’re kinda horrible.

Of course, not everyone reacts to new information in this fashion. Research indicates that our brains can be structured in ways that correlate with our willingness to embrace difference (and with our political views). The concept of fixed vs. growth mindset explores similar differences from another angle.

For the less-fixed types, “Autistic/trans folks have always been in your life” actually can be comforting. Oh, the world isn’t changing at all; it’s always been like this, and I’ve done just fine so far. For those more comfortable with embracing ambiguity and difference, this statement may even be delivered with an edge of annoyance: We’re here, we’re (neuro)queer, please get used to it so we can stop teaching 101-level classes about how we do in fact exist.

But how do we get past the Chickens Little, for whom “hey, we’ve always been here” is a reason to avoid the 101 classroom instead of entering it? I don’t know. I just know that a lot of our modern anxieties aren’t as diverse as we think.