neurodivergence

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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neurodivergence

I Want to Believe (In Myself): The X-Files, Star Trek, and (More Than) Autistic Special Interests

There’s a post at Chavisory’s Notebook today that I recommend you read before reading this, because context.  Also so I don’t have to repeat it.  Picture it cut and pasted in this space (except with more citing and less plagiarism).

I was obsessed with The X-Files as a teenager.  Obsessed enough that, unlike any of my prior so-called “special interests,” my family actually knew about this one* and, to a certain extent, supported it.**  Enough that I actually made a couple friends, the first friends my own age I’d had since elementary school, based on our shared interest in the show.

But even to my friends and family, I concealed the depth of my absorption.  I didn’t really understand it myself.  It lasted from a few weeks after the series’ premiere (“Ice,” actually) until just after the first movie- the second-longest-running special interest I’d had until that time.  The first one was Star Trek.

Watching the new episodes has been hard for me.  For one thing, they’re intensely triggering.  It took me three and a half weeks after they began running to convince myself to watch them at all – merely thinking about The X-Files was stirring up all kinds of amorphous emotional crap I thought I had resolved in my teen years but had in fact simply left behind.  Watching the new episodes themselves stirred up more amorphous emotional crap.

I almost didn’t watch “Home Again” at all.  I’m tired, tired of having spent the entire past week in a PTSD fog, tired of trying to figure out how it is that I’ve rewatched all of The Next Generation and Voyager since my teen years without my PTSD making a peep, tired of carrying, always carrying, this trauma.  I can forget about it at times but I cannot put it down.

But of course, the scariest questions are the ones that most need an answer.  And the answer to this one – why Star Trek still excites me to the point that I literally taught a class about the Borg in Voyager last year but why The X-Files is an emotional minefield – is becoming a way in for me to start to unravel the trauma of my teenage years.

I didn’t have the word “trauma” when I started watching The X-Files.  In fact, I didn’t have any words at all for what was happening to me – for what it’s like to go through puberty, without friends, with a mother who insists you pull a perfect Elsa, while autistic but without the word “autistic.”  If I’d had words like “trauma” or “autistic,” I don’t think I could have accepted them.  Not on my own; not without help.  And the help I would have needed to accept them would itself have greatly reduced the trauma.

The words I had were words like weird.  Wrong.  Secretly insane – literally; I believed for a long time that I had what my parents’ 1970s psych textbooks called “childhood schizophrenia”***.  Crazy.  And, yes, spooky.

Both Star Trek and The X-Files stick with me because each of them gave me a vocabulary for who and what I was, at a time in my life when I desperately needed a vocabulary.  They are two very different shows; they generated two very different vocabularies.

Star Trek was (as it has always been) an aspirational vocabulary.  It gave me hope for a world run by and for the benefit of humans in which I, markedly “other,” could be accepted and valued nevertheless – valued for my otherness, even.  This, I think, is why I don’t find rewatching Star Trek triggering.  The Star Trek universe in general, and Deep Space Nine and Voyager in particular, are about places I could belong.  I don’t identify with Barclay but I get Barclay.

The vocabulary The X-Files gave me was more realistic.  The X-Files was, for me, a show about the dangers of being different and the impossibility of being anything else.  It was a show about my reality: about the obliviousness with which most people go through their lives until you scratch the surface of that life, and about the incredible risks that boil out when you do.

As a Facebook friend of mine recently pointed out, autism is not an invisible disability.  It shows in our movement, our behavior, our use of language in various ways.  Difference frightens the human brain, especially when it is close enough to be “just like us” but…not quite.  Freud’s word for it was “unheimlich,” or uncanny.  Star Trek made aliens just like us; The X-Files made them….not quite.

To be uncanny is dangerous.  And we know it.  This is why parents of autistic kids spend tens of thousands on therapies whose only goal is to make the kid appear less uncanny.  Those parents are terrified.  That terror is a survival mechanism.  It arises pre-conscious thought, and so its presence, itself, is not cause for judgment.  It’s what people do once that terror becomes conscious that is a cause for judgment.

Star Trek presumed that humans would “grow out” of that pre-conscious terror of the uncanny, essentially rendering it canny.  The X-Files disagrees.  It does not have a particularly optimistic view of how people will react when faced with the uncanny – or, indeed, how they will react when faced with the idea of the uncanny.  Sure, there are moments, like “Clyde Bruckman’s Final Repose” or Season 10’s “Mulder and Scully Meet the Were-Monster,” that can be remarkably accepting.  But this is largely a show about danger.

It’s also a show about the importance of being right – even when you are wrong.

The X-Files was my anti-ABA.  It taught me that one could get away with being weird or crazy or spooky, as long as one was, at least, not wrong for being so.  It taught me that “weird and crazy and spooky” and “wrong” are not synonyms – that there is a way to be right even while being uncanny.  It taught me that pursuing that sense of being right, even when it made me uncanny as hell, was good.  And it taught me that it was okay to believe that I was maybe not wrong even when the whole world was telling me I was.

That was my fascination with The X-Files, and with Mulder in particular.  I could sound completely crazy but maybe I was not wrong.  

It took over twenty years and four new episodes for that message to sink in.  Like Mulder, I wanted to believe.  But it was not the same thing as believing.

And maybe there would be someone – someone who wasn’t uncanny, who spoke the language that in my wrongness I didn’t speak, someone ordinarily human – who would back me up on this.

*(and still gives me shit about it, as if it were nothing but a garden-variety crush which of course had to have been on David Duchovny and could not possibly have been on Gillian Anderson – but I digress)

**By which I mean “they let me commandeer the VCR to tape episodes and rewatch them until the tapes wore out, and also bought me the show guides, several of the novels, and both “Songs in the Key of X” and the Mark Snow soundtrack,” and also “they did not actively try to stop me being interested.”  They would have said “Oh, The X-Files is her favorite TV show,” as if “favorite” could begin to adequately encompass what that show did for me.

***Turns out I was right: “childhood schizophrenia” was the diagnosis given to a great many people in the mid-twentieth century who actually had – you guessed it – autism.

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neurodivergence, Uncategorized

Emotional Labor, Gender, and the Erasure of Autistic Women

This post was originally published at Autistic Academic.

Yesterday, I stumbled across a listicle at My Aspergers Child, titled “Married to an Aspie: 25 Tips for Spouses.”  As you might expect from a title containing the word “Aspie” and the improbable number “25,” this list was terrible (and did not, in fact, contain 25 tips).  Emma and I unpacked several of its varied problematic assumptions here; I spoofed it on Field Notes on Allistics here, and The Digital Hyperlexic did some more unpacking here.

What I’d like to do now is to discuss the intersection of gender, assumptions about emotional labor, and the erasure or overlooking of autistic women that results.  This is a topic I’ve discussed more than once on this blog in various ways, although I’ve never quite gotten to the heart of the emotional labor question.

What is emotional labor?

Emotional labor is the work done to organize, remember, prioritize, sort, and structure daily lives and relationships.  In short, it’s the effort put into giving a fuck about other people’s thoughts, needs, and desires.  There’s an excellent introduction to emotional labor and the ways it manifests (as well as ways to do it) at Brute Reason here.

The problem with emotional labor, of course, is that generally speaking it is not considered “work” at all.  Rather, women in particular are expected to provide it “out of the goodness of our hearts.”  Emotional labor is actively cast as not-work by being cast instead as a natural urge women simply have – as if, rather than calling on women to generate effort, we’re actually doing them a favor by foisting the world’s give-a-fuck duties onto them.

In cishet relationships in particular, women are raised to, are generally expected to, and frequently end up doing a disproportionate amount of the emotional labor, as this massive MetaFilter thread on the topic attests.  (The days – literal days – it will take you to read the entire thread are wholly worthwhile.)  We cast emotional labor not only as “women’s work,” but as not even work.  Women who fail to put up with “affirmation, forbearance, consultation, pacifying, guidance, tutorial, weathering abuse,” as Jess Zimmerman sums up emotional labor (at the link in the above paragraph), are not only punished for it socially but are in a sense not considered women at all – and the enforcers of this, as N.I. Nicholson also points out (at the Digital Hyperlexic), are frequently other women.  Certainly, as Nicholson also points out, failing to do the emotional labor “correctly” is cast as social and romantic suicide: “no man will ever want you.”

What does this have to do with autism?

Consider, first, how autism in general and Asperger syndrome in particular are portrayed as deficits in emotional labor, specifically.  The DSM-IV criteria for Asperger Syndrome (which differ from the criteria for autism only in their willingness to allow for a broader range of features in speech development) specifically target certain differences, difficulties, or absences in expected displays of emotional labor:

  • marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction,
  • failure to develop peer relationships appropriate to developmental level,
  • a lack of spontaneous seeking to share enjoyment, interest or achievements with other people (e.g. by a lack of showing, bringing, or pointing out objects of interest to other people)
  • lack of social or emotional reciprocity.

The last criteria in this section, “lack of social or emotional reciprocity,” is a demand for emotional labor, full stop.  Emotional reciprocity is the one thing all forms of emotional labor have in common.  The other three are more specific examples of emotional labor: using nonverbals that make the other person feel noticed and attended to, energy invested in “appropriate” relationships, and “sharing” (the ambiguous construction “of interest to other people” in the list of examples, implying “of interest to the patient, pointed out to other people” and “of interest to the other person”, is particularly telling).

It is the lack of “appropriately” displayed emotional labor that leads researchers like Simon Baron-Cohen to cling to the notion of a “theory of mind” deficit in autism and similar developmental disorders.  In In a Different Key: The Story of Autism, authors Donvan and Zucker accuse ASAN founder Ari Ne’eman of “unmistakably” having autism and of possessing no Theory of Mind because, in a conversation with “autism parent” Liz Bell, Ne’eman expressed disagreement with Bell’s position on autism, but did not do the emotional labor of making that disagreement palatable to Bell.

And, of course, “25 Tips for Spouses,” many of which boil down to assumptions that the “Aspie” half of an Aspie-NT marriage is failing to do his (always his, according to “25 Tips”) fair share of the emotional labor, and that this is somehow autism’s fault:

3. Although he genuinely loves his spouse, the Aspie does not know how to show this in a practical way sometimes.
12. Because the Aspie does not have the same relational needs as the NT partner, he may be unable to recognize instinctively or to meet the emotional needs of his partner. Marriages can thus form some dysfunctional relationship patterns.
13. For NTs who had normal expectations of the mutuality of marriage, there may be a sense of betrayal and a feeling of being used and trapped while in a relationship with an Aspie.
15. In the privacy of their relationship, the NT partner may become physically and emotionally drained, working overtime to keep life on track for both of them.

18. NT partners may begin to feel that they are entirely defined by the role they fill for their Aspie partner. There can be a sense that there is little mutuality, equality and justice.
19. NT partners may feel that they are daily sacrificing their own sense of self to help fulfill the priorities of the Aspie partner.
20. NT partners may resent the reality of living on terms dictated by the needs and priorities of the Aspie partner.

Insofar as Asperger syndrome is understood as a deficit of emotional labor, these statements make a certain amount of sense.  But notice how “Aspie” and “man” are perpetually conflated – not only here, but in most dating guides for people with Asperger syndrome (as Emma and I have discussed in previous posts), and in the literature on so-called “Cassandra Syndrome.”  The overwhelming majority of people who claim “Cassandra Syndrome” are non-autistic women married to autistic men, and the fundamental claim is that the man in question has so terribly neglected the emotional labor of the marriage that it has caused actual trauma to the woman.

How Autistic Women Get Lost

Emotional labor is a demand we place primarily on women.  We expect men to do far less emotional labor than women; socially, we tend to punish men who do “too much” emotional labor as excessively “effeminate.”  We expect autistic people to do even less emotional labor – to the point of doing none at all – and we pathologize this lack of emotional labor-doing as both a tragedy and a fault.  Meanwhile, autistic girls and women get lost, both before and after diagnosis.

We know that girls and women don’t get diagnosed with autism as frequently as men and boys.  There have been a spate of articles in recent years on why this might be happening and how to address it.

One answer that has been floated in several circles is that we “miss” autistic girls and women in diagnosis because girls are taught and socialized, from birth, to perform emotional labor.  When the diagnostic criteria for autism spectrum disorder still emphasize deficits in emotional labor, clinicians are looking for lack – not for difference, which is more likely to appear in girls who have been socialized to perform emotional-labor rituals without being given any insight as to their meaning or purpose.

(This, by the way, has nothing to do with whether girls are “innately better” at emotional labor than boys.  It has everything to do with how both girls and boys are raised.  Girls are expected to at least make the effort; boys are not.  Girls, therefore, show up in clinicians’ offices making the effort; boys do not.  While no studies exist yet, I suspect that a study of boys who are raised in households that demand more emotional labor from them also “fly under the radar” of diagnosis more easily than boys who are raised without such demands.)

What of the girls and women who are diagnosed – who are, as I was, probed by clinicans until our difference in emotional labor’s performance becomes apparent?  Well, if you ask the authors of “25 Steps,” we don’t exist – or we don’t marry NTs, or our marriages are never affected by our autism.

(If this last one were true, one would expect a crusade to demand equal emotional labor from boys and men.  Emotional labor “cures” autism!  Except, of course, it does not.)

I’ve written about this question before.  Long story short, autistic girls and women are subjected to the continued demand, attached to our (actual or perceived) gender, to do the emotional labor, no matter what it is, and certainly no matter whether or not we have a developmental disability that specifically lists deficits in emotional labor ability in its diagnostic criteria.  What becomes a convenient scapegoat for men in emotional-labor-lopsided marriages (it’s not him, it’s his autism!) becomes a whiny excuse for women.

This is also why creepy male behavior is excusable with the reasoning “but he might be autistic!,” while curt female behavior is not.  His autism is a reason to pity and excuse his lack of emotional labor; our autism is no excuse to skip out on our expected over-share of the emotional labor.

And this is why there are no “25 Tips” for autistic women married to non-autistic men (like me).  I’m presumed not to need them.  As a woman, I’m presumed to have the (innate or trained) ability to do a disproportionately large share of the emotional labor, to absorb my husband’s disproportionately small share.  (It is also assumed that the shares are lopsided in exactly that way; no one asks how my husband and I have negotiated the emotional labor in our own marriage.)  It is presumed that he will never feel “betrayed,” “used,” or “trapped” by me and my autism, or that he will never need to turn to an Internet listicle for help if he does.  Because I’m a woman, and disproportionate unpaid emotional labor is my birthright.

Thus autistic girls and women get overlooked before diagnosis and erased after it.  Our cultural presumptions about who is able and equipped to do emotional labor make it easy to both diagnose and dismiss autistic men as “just like that,” while blaming and burdening autistic women with “doing it anyway.”  When autistic women don’t “do it anyway,” they’re de-feminized in countless ways.  It’s a lose-lose game.  Crone Island beckons.

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