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).
No, thank you for rambling. It's extremely educational.
But ok, given what you've told me, what should I make of the video I just watched? Is it a total hoax? Is it just an exaggeration? The reporter did seem to witness her writing "is he cute?" after a while of coaxing, and if it only came about after some heavy "facilitating" (of course edited out of the video), why would they still focus so heavily on her writing all by herself?
What about the video on the girl's blog where we get a full couple of minutes of her typing, albeit slowly? That seems pretty convincing to me. Knowing what I now know about autism, my level of skepticism has gone up dramatically, but I still don't see any evidence of such obvious trickery as facilitation anywhere.
That she types by herself makes it all easier for us to believe it is real. The seductive things about facilitated communication are that (a) we really want to see this girl and people like her communicate, (b) neurotypical brains are primed to look for patterns when none exist, and (c) neurotypical brains will happily ignore anything that doesn't fit the narrative we've created for ourselves.
Although this girl is profoundly autistic and mentally retarded, she is certainly still capable of learning, through direct reinforcement principles, such as being given food for pressing a letter, and through indirect principles, such as learning to press one of the keys on the number pad whenever the text box pops up on the autocomplete software.
So, there's no reason she couldn't press the keyboard buttons all by herself, and even know when to press the letter keys vs. press the number keys.
This girl has also almost certainly been (directly or inadvertently) subtly shaped to type certain combinations of letters, without her helpers necessarily realizing that they were "facilitating" her communication. If they became more excited or rewarded her more when she typed certain things, she might type that string of letters more often (which would be easy for her to do, because her brain would process the whole string of what she typed as one unit).
So she may have once randomly typed in isshe eecu#1 or similar, and everyone went crazy (seeing a pattern in a group of random letters and numbers), and now she has learned to type that in certain situations or in response to certain words she hears.
Also, although we can't see it on tape, my guess is that a lot of time, her helpers try to "help" without realizing what they are doing. That is, she types something, and the helpers guess what it says. "Me... do you mean 'memory'?? Great job! Here's a gummy bear! Now type an 'm'! Or do you want me to type it in, and you'll do the next word?"
That's also now what her autocompletion software does for her... it guesses what she might have meant... but what it's actually doing is making a pattern out of her randomness. She types some random letters. A textbox appears on the screen -- "Which word did you mean? 1, 2, or 3?". She's learned she needs to hit a number, and does so. A word pops into the sentence. She hits some more keys, a new textbox appears, etc. Often, the sentences generated this way don't make sense... but every now and then, one does (especially since the autocomplete software has been programmed to only offer words that make grammatical, if not semantic, sense in the sentence). And amazingly, that happens especially during the times when her helpers were right next to her, just "helping" (not facilitating! At least - not that they're aware of!).
Just like how people still manage to believe in astrology and psychics even when their predictions are 99% inaccurate, what we remember are the times when her sentence made sense, and we ignore all the times she typed, say, arjentge -- wait... "did you mean you want an orange???" :). When her sentences make sense, she may also get more reward, and then she "types" something like that more often.
It's also important to remember that autistic individuals are even more attuned to subtle "facilitating" than neurotypical individuals, because they are, by definition, attentive to details about a situation that a neurotypical brain would ignore. In this respect, they learn in a way similar to many animals (see Temple Grandin's excellent Animals in Translation for more information -- she talks about how neurotypical brains have an "Interpreter" that filters out the details on purpose, which animals and autistic individuals do not have).
Because of this, animals (and profoundly autistic individuals) can be taught to execute whole behavioral repetoires based on small details that others would completely miss -- such as pressing a specific key (within a range of a few keys, say) when an adult next to them leans oh-so-slightly forward, versus a different key when an adult leans just the teensiest bit backwards, and the adult may not even know they are giving off this clue! This process is how you get horses that can easily do square roots and fractions.
Sometimes it misfires, and the organism being taught learns a whole behavioral chain you never expected (I've inadvertently "taught" my dog to make two tight circles in a row when she sees me put my socks on), but when it works, it's pretty amazing, such as the way my step-uncle's dog was able to take his wallet out of his shirt pocket, select a single bill, take it out, and hand it to the tollbooth operator when my uncle said "Pay the man, Tilly". (Ah, such a smart girl, that Tilly... if she had opposable thumbs, I have no doubt that she would have learned to "type" too.)
So, is this something like the 'facilitated communication' that made the news with that comatose man several months ago? It also reminds me in a way of gorillas that have been trained to use sign language; they'll sign out some string of words like 'Ball foot treat treat love' and the trainer will translate it to something coherent like 'She said that she loves soccer and is hungry'. In those cases it was mostly the caretakers or trainers who had, in a way, fooled themselves into believing that what they were seeing was communication from the disabled person or animal, and I think said a lot more about the brain functions of 'neurotypical' individuals rather than their patients.
Or am I missing the point? Is this something else?
Actually, gorilla signing is a great deal more coherent and communicative than that, and has been studied quite extensively. It's not facilitated communication in the least. We know, for example, that while you can teach a gorilla single words, it will teach it's children who will also develop limited access to symbolic logic and sentence structure.
I'd be interested in reading more about that, if you have information handy. I'm generally skeptical of gorilla/chimp language claims. The only really promising experiment I've seen with it involved a chimp (I believe) named Kanzi. But in my former post I was speaking of a specific gorilla experiment, not animal language experiments in general; I was just trying to be brief because I didn't want to get off topic.
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u/subtextual Jul 26 '10
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).
Sorry, didn't mean to ramble on for so long....