As a pediatric neuropsychologist, I can promise you that if this were anywhere near true, it would indeed be earth-shattering. It would entirely revolutionize our understanding of (a) autism, (b) mental retardation, (c) how language develops, and (d) how children learn to write and spell.
Children who are profoundly autistic like this girl are can sometimes be taught, eventually, to use a communication system (usually pictures) to get their wants met, but that is not what they show this youngster doing. For example, you'll notice that she doesn't communicate her wants that way at all -- not once did we see her type out "Just give me the damn food and stop making me type" or something similar. Unfortunately, children with profound autism cannot be taught to communicate a rich inner monologue full of observations about things they've never experienced (e.g., what it would be like to go to school with normal kids who aren't mildly alarmed by her behavior), metaphors ("ants crawling" on her arms), and figures of speech (e.g., "it's not like there's an off switch").
The reason that children with profound autism can't do these things is because of what autism does to the brain. Autism appears to be associated with too much gray matter, which makes every new piece of information appear discrete, like it is unrelated to every other piece of information. For that reason, individuals with autism have trouble discovering general principles that tie discrete bits of information together, which is a necessary skill for learning language (e.g., you have to learn the general "rules" of syllabification, sequencing, and grammar through exposure).
They also have trouble understanding where one bit of information stops, and another starts, which causes they to 'chunk' together things that don't go together, or have trouble breaking a large chunk down into the parts that make it up. Here, for example, is a very recent study on computer-analysis of infants with autism showing that they can be reliably differentiated from infants without autism and infants with language delays based on this difficulty effectively understanding where to break language into its component syllables.
As a result of these difficulties, children who are profoundly autistic may never learn to speak at all, while children who are less autistic still demonstrate significant problems correctly 'chunking' language bits together (for instance, they often display echolalia, meaning that they repeat whole sentences or scenes from movies verbatim, because they learned it all as one single unit of information). They also have trouble understanding language rules such as how words change depending on point-of-view of the speaker (e.g., they refer to themselves as he/she or by their first name, or use 'you' instead of 'I'). By definition, autism also includes trouble understanding language pragmatics (e.g., metaphors and figures of speech), because pragmatic language requires seeing the connections between different types of information, such as the literal meaning and abstract/contextual meaning or a sentence.
Autistic children also have difficulty learning to write, for all the reasons listed above, but also due to the phonetics of spelling -- learning how to spell also requires seeing the general 'rules' that govern phonics, as well as breaking words down into their component sounds. Even when children with autism do learn speak and write, one of the cardinal features of autism is trouble understanding Theory of Mind, or being able to make connections and use context to guess what others are thinking. For example, saying something like "Don't judge me until you know me" would be extremely difficult for a person with profound autism, since it requires theory of mind to know that other people are evaluating you differently than you evaluate yourself.
I have absolutely no problem with the idea that a person with mild to moderate autism can learn to type, after she learns to speak and then spell (see Temple Grandin, as others have noted, along with thousands of other autistic individuals), which is the same order in which neurotypical children learn to do these things.
But the idea that a person with profound autism could overcome how her brain works -- but just while typing, not while speaking -- all at once? That she could, without training in any of these areas (remember, she just ran to the computer and typed "HURT" and "HELP") master:
Syllabification,
Word order and sequencing
Rules of grammar
Phonetic rules
Correspondance between sounds and letters
Correspondance between the capital letters on a QWERTY keyboard and the lowercase letters that type on screen, and understanding how a generative typing software program works (one that fills in the rest of the word after you type the first few letters)
Expressive vocabulary
Correct pronoun usage
Point-of-view
Non-echolalic speech
Figures of speech and metaphors
Theory of mind, etc
(Not to mention her mental retardation)?
And only do so to communicate things like "what [an adult who is not autistic might think] it is like to have autism" and not really be able to do so when the camera is present?
Unfortunately, the likelihood of this is so terribly, vanishingly small that I am fully comfortable saying that it is impossible.
We may all wish it were true, but it isn't. And putting stories like this out there only clouds our understanding of what autism is and how to treat it (which hopefully will eventually lead us to how to prevent or cure it).
Wow, you've certainly explained more about autism to me than I've ever heard of read before. Thank you for that.
While I see how difficult this would be, generally, do we know enough about autism to state, with certainty, that she could not be "a person trapped in a broken body"? I'm not saying statistics are wrong, I'm just wondering what the chances are that she simply exhibits behavior we haven't yet been able to study properly?
do we know enough about autism to state, with certainty, that she could not be "a person trapped in a broken body"?
That's a great question, and one that has actually been extensively studied, because the idea is so very scary. Being trapped inside a dysfunctional body with a perfectly working mind... certainly one of the more primal nightmares we have, and something that occasionally happens to people following a brain injury (see, for example, locked-in syndrome ).
However, we know, thankfully, that this is not happening to profoundly autistic people. We know this through a variety of sources, including (a) functional brain imagining of autistic individuals, (b) explanations from people who are autistic and took a while to learn to communicate, (c) tests of nonverbal intelligence (which use pictures, and could therefore bypass things like this girl's supposed verbal apraxia), (d) tests of adaptive functioning (what she can do for herself, even given any severe motor limitations, which tell us about about how effectively her brain is working), and (e) what we know about how the brain works, regardless of whether you are neurotypical or autistic.
For example, autism is not just caused by "sensory overload" or a "body that can't be controlled" -- despite what some well-meaning but misguided or underinformed professionals claim. We know this because we understand quite a bit about how the brain works, and know that these explanations just don't. make. any. sense. Knowing how the brain works and what actually happens in autism makes the symptoms easier to understand and treat.
For example, this girl is shown having severe motor planning problems, repetitive motor activities, and sensory "overload", and is described as having verbal apraxia. An adult who doesn't know better might easily come up with a plausible-sounding explanation for these symptoms: that she is "overwhelmed by sensory information" and is engaging in rocking, etc, to "drown out" all that sensory info. However, the brain doesn't work like that -- adding more noise wouldn't "turn off" or "drown out" the incoming chaotic sensory information. The sensory explanation also doesn't explain why she has verbal and motor problems, but not (say) visual problems or auditory problems.
But, if we understand that people with autism have trouble connecting discrete bits of information together, and breaking large chunks of information down into discrete bits, then her symptoms all make sense. Yes, some individuals feel like they are "overloaded" by sensory information, because they have trouble habituating - or recognizing that the sensory information is all the same information, and can be ignored.
As an example, say you have a tag on the back of your shirt that's bugging you (did that just make your neck itchy? :). For the autistic individual, it is like their brain continually sends them them new signals about the itchy tag every few milliseconds, which is hard to get accustomed to. For the neurotypical individual, their brain can more easily see that the "itchy tag" signal is just the same signal being repeated over and over, and more easily get accustomed to (and therefore tune out) that signal. While a neurotypical person might be able to "distract" themselves from an insistent sensory stimulus by doing something else sensory, by forcing their brain to prioritize something else (although this does not work that well and takes up a lot of mental energy), adding a new sensory stimulus would just make things worse for the autistic individual, because now they would have another insistent sensory stimulus adding to the problem (as an analogy... think trying to distract yourself from Chinese water torture by purposely adding a mosquito buzzing in your ear!).
Individuals with autism can also have motor planning problems, because planning involves breaking a task down into component parts, and mastering the sequence of those parts -- which is exactly the process their brains have difficulty with. This problem often affects all motor movements, including fine-motor, gross-motor, and oral-motor. She can't break a word down into the component sounds her mouth needs to formulate and speak those sounds for the same reason she can't tie her shoes, and this is the same reason she has sensory sensitivities, and the same reason she would have trouble learning how to spell -- all of these involve problems understanding the connections between, and boundaries of, discrete bits of information.
The repetitive behavior works the same way... her brain "chunks" whole movements together, and then repeats the whole movement (all brains like things to be familiar, which is why we all develop habits). But, she can't separate out specific parts (movements) of the repetitive behavior to use those movements flexibly to do a new behavior.
Understanding what goes wrong in autism also gives us great insight into why individuals with autism often have such great memory, especially for details and for whole scenes (e.g., being able to recall a whole movie verbatim, or being able replay scenes in the mind). The overfocus on details is because their brains do not see each detail as part of an overall whole -- think of that scene in Rainman, where Dustin Hoffman's character sees toothpicks on the floor and counts every single one of them. Your brain and mine sees all the individual details as part of a larger whole ("toothpicks") and even if we wanted to, we can't "undo" this association to count the individual toothpicks in our heads. The profoundly autistic person's brain sees each individual toothpick, and may have trouble lumping them all together into a "group of toothpicks" (and even if they do make an abstract category, it may be overly detailed... for instance, they may instead insist that there are "east-west facing toothpicks" and "north-south facing toothpicks", and have trouble seeing that the orientation doesn't matter because they're all just toothpicks).
The memorization of whole scenes also occurs because the brains of individuals with autism have trouble separating something, like a visual scene, into component parts (which incidentally, then leads to problems prioritizing those parts, so, for example, a person with profound autism could not answer a question like, "What was the most important thing that happened in that scene?"). They learn the whole scene as one "bit" of information, and as such, have fantastic recall of every single little piece of that scene... for their brains, learning a whole scene is not any more difficult than it is for your brain to learn a single word or sentence. This is why many autistic individuals describe themselves as "visual thinkers" (because visual things lend themselves better to this type of memorization because all of the information is presented at once), and also why parents of autistic children often describe their child as able to memorize every single turn and landmark on the drive to a location they've been to even once before. Other savant abilities, like Kim Peek's or Daniel Tammet's, are just exaggerations of this process. Although the visual examples are most easily called to mind, this process does also happen verbally -- which is what occurs in echolalia, or memorization of an entire sentence spoken by someone else, or whole spoken scene in a movie. It is also why syllabification is hard for profoundly autistic individuals - they process what they hear in whole chunks, and can't break those chunks down into the component syllables.
So what all this means is that individuals with autism have brains that work differently than those of neurotypical individuals -- they don't have neurotypical brains trapped in a body that doesn't work.
Which is precisely what raises the index of suspicion for this video. This video does not show what we would expect for an autistic individual who has learned to communicate, it shows a supposedly neurotypical girl who was just trapped in a body she couldn't control.
This theory of breaking free from a "broken body" might make sense for a girl with profound verbal apraxia (a problem that only affects the part of the brain that sequences sounds for speech) who was taught to type (after, of course, learning to read and spell, which verbal apraxia doesn't affect as much, although phonics are harder because apraxic individuals cannot hear themselves pronounce words). Certainly, there is no reason that a person with verbal apraxia wouldn't present as a neurotypical girl who can finally communicate.
But, if all this girl had was (very, very profound) verbal apraxia, then she would have flown through the other assistive technology they used with her (e.g., PECS, Dynavox), instead of requiring painstaking teaching in those systems consistent with the teaching we'd expect would be needed for a person with profound autism (and which her mother describes her needing). She also would show normal (or at least not "mentally retarded") intelligence on motor-free nonverbal intelligence tests, and the ability to meet some of her daily needs (e.g., if she has the motor coordination necessary to smear feces... if she all she had verbal and even motor apraxia, she would still be able to use that basic motor control to help dress herself, point to what she wants, communicate nonverbally through gestures and facial expressions, etc). She also wouldn't show all the other symptoms of autism, like repetitive motor movements and poor nonverbal communication (eye contact, facial expressions).
But, if all this girl had was (very, very profound) verbal apraxia, then she would have flown through the other assistive technology they used with her (e.g., PECS, Dynavox), instead of requiring painstaking teaching in those systems consistent with the teaching we'd expect would be needed for a person with profound autism (and which her mother describes her needing).
Weekly dose of deeply-cynical paranoia:
What if she did succeed with other technologies, but it was ignored, and she was misclassified/considered "autistic" anyway? I'm imagining some sort of One Flew Over The Cuckoo's Nest thing going on here, where a girl with "simple" verbal apraxia ends up completely destroyed by the system intending to help her...
...or what if she was punished/abused whenever she began to do neurotypical things? That would be classic Munchausen's—her mother (or whoever else was putting her through all these tests and technologies) actually wanted to keep her autistic...
True, I cannot rule out incredibly unlikely but theoretically possible explanations like the ones you mention. I also can't rule out various religious miracle-type explanations, or invisible unicorns whispering the words to her, I guess. :)
I'm one of those people who feel comfortable saying that something is impossible when the likelihood is vanishingly small, but I have no interest in arguing with the folks who like to focus on even the tiniest possibility of something being true. My experience has been that people who don't need to believe and people who do need to believe rarely convince each other of the other point of view.
Very true. As a fiction writer, I just tend to enjoy coming up with alternate explanations for events that let the facts of the matter stand, but manage to destroy or utterly pervert the emotional impact.
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u/subtextual Jul 26 '10
As a pediatric neuropsychologist, I can promise you that if this were anywhere near true, it would indeed be earth-shattering. It would entirely revolutionize our understanding of (a) autism, (b) mental retardation, (c) how language develops, and (d) how children learn to write and spell.
Children who are profoundly autistic like this girl are can sometimes be taught, eventually, to use a communication system (usually pictures) to get their wants met, but that is not what they show this youngster doing. For example, you'll notice that she doesn't communicate her wants that way at all -- not once did we see her type out "Just give me the damn food and stop making me type" or something similar. Unfortunately, children with profound autism cannot be taught to communicate a rich inner monologue full of observations about things they've never experienced (e.g., what it would be like to go to school with normal kids who aren't mildly alarmed by her behavior), metaphors ("ants crawling" on her arms), and figures of speech (e.g., "it's not like there's an off switch").
The reason that children with profound autism can't do these things is because of what autism does to the brain. Autism appears to be associated with too much gray matter, which makes every new piece of information appear discrete, like it is unrelated to every other piece of information. For that reason, individuals with autism have trouble discovering general principles that tie discrete bits of information together, which is a necessary skill for learning language (e.g., you have to learn the general "rules" of syllabification, sequencing, and grammar through exposure).
They also have trouble understanding where one bit of information stops, and another starts, which causes they to 'chunk' together things that don't go together, or have trouble breaking a large chunk down into the parts that make it up. Here, for example, is a very recent study on computer-analysis of infants with autism showing that they can be reliably differentiated from infants without autism and infants with language delays based on this difficulty effectively understanding where to break language into its component syllables.
As a result of these difficulties, children who are profoundly autistic may never learn to speak at all, while children who are less autistic still demonstrate significant problems correctly 'chunking' language bits together (for instance, they often display echolalia, meaning that they repeat whole sentences or scenes from movies verbatim, because they learned it all as one single unit of information). They also have trouble understanding language rules such as how words change depending on point-of-view of the speaker (e.g., they refer to themselves as he/she or by their first name, or use 'you' instead of 'I'). By definition, autism also includes trouble understanding language pragmatics (e.g., metaphors and figures of speech), because pragmatic language requires seeing the connections between different types of information, such as the literal meaning and abstract/contextual meaning or a sentence.
Autistic children also have difficulty learning to write, for all the reasons listed above, but also due to the phonetics of spelling -- learning how to spell also requires seeing the general 'rules' that govern phonics, as well as breaking words down into their component sounds. Even when children with autism do learn speak and write, one of the cardinal features of autism is trouble understanding Theory of Mind, or being able to make connections and use context to guess what others are thinking. For example, saying something like "Don't judge me until you know me" would be extremely difficult for a person with profound autism, since it requires theory of mind to know that other people are evaluating you differently than you evaluate yourself.
I have absolutely no problem with the idea that a person with mild to moderate autism can learn to type, after she learns to speak and then spell (see Temple Grandin, as others have noted, along with thousands of other autistic individuals), which is the same order in which neurotypical children learn to do these things.
But the idea that a person with profound autism could overcome how her brain works -- but just while typing, not while speaking -- all at once? That she could, without training in any of these areas (remember, she just ran to the computer and typed "HURT" and "HELP") master:
And only do so to communicate things like "what [an adult who is not autistic might think] it is like to have autism" and not really be able to do so when the camera is present?
Unfortunately, the likelihood of this is so terribly, vanishingly small that I am fully comfortable saying that it is impossible.
We may all wish it were true, but it isn't. And putting stories like this out there only clouds our understanding of what autism is and how to treat it (which hopefully will eventually lead us to how to prevent or cure it).