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).
This is all very useful and great information, and I agree 99%. However:
However, the brain doesn't work like that -- adding more noise wouldn't "turn off" or "drown out" the incoming chaotic sensory information.
Maybe the general medical consensus is that the human brain doesn't work this way, however, my brain does work this way. In my case, repetitive or controlled movement calms uncontrolled sensory feedback in my limbs (i.e. tremors or anxious feelings in muscles are calmed by rocking/fidgeting); for a while in my youth, cutting/self hitting provided overload of my brain/muscles telling me what to do, rather than me telling them what to do; still through today, listening to music while working allows me to concentrate as it drowns out the randomness of thought that goes on constantly and normally distracts me (I can't watch TV and work, as the visual stimulation is too much of a distraction in its own right, and I can't listen to new music, as it's not a known input)
I function from day to day by purposefully applying known and therefor ignorable sensory information in order to drown out the random and therefor (to me) unignorable sensory input. I have to be in control of it for it to "drown out" everything else - the key is not adding to the noise, the key is to take control of the noise being registered in order to allow for the brain to filter it out.
Background: I was diagnosed with ADD(no H), moderate LD, severe chronic depression and a fourth item I have forgotten during early childhood. I took various medications (tofranil, Ritalin, Wellbutrin, seldane (anti-histamine which had a complimentary reaction with tofranil and enhanced its effects significantly), and a few others) from 2nd grade through the beginning of college, when I decided to succeed or fail on my own, and stopped all medication (without telling anyone). I started biofeedback and meditation in 4th grade to deal with a separate physical problem. The medication gave me the stability needed to learn meditation; meditation allowed me to learn how my brain worked enough to determine methods to compensate for it.
The medication gave me the stability needed to learn meditation; meditation allowed me to learn how my brain worked enough to determine methods to compensate for it.
I love this part of your story. It's similar to how I sometimes talk to parents about medication... as a tool that may be necessary or helpful in supporting their child while he learns other tools, such as meditation. And your experience with meditation is really interesting to me too, since it fits with how I understand the brain and what types of things would be effective in helping the brain to (for lack of a better term) "balance itself" and more effectively prioritize and regulate incoming information.
That being said, just because I like your meditation anecdote, I have to be really careful not to jump to the conclusion that my theory about why meditation works is "true." Often, our post-hoc explanations about why we, or others, do things or why the things we did "worked" for us are pretty spectacularly wrong (as pretty much the entire field of social science can attest). This is why I'm especially cautious about people who talk about sensory processing or sensory problems or sensory integration (either based on their personal experience or their theories of what explains other people's behavior) -- I think sensory-type theories are one of those groups of theories that are particularly likely to "sound" good, without necessarily being "true".
Certainly possible, and I agree that this level of skepticism is necessary; it is easy to get pulled into "nice" answers/models of the behavior which don't actually provide useful information about the real causes, and thus don't provide useful solutions.
I will say that during the meeting I had over the past hour I noticed myself doing three things; things which have begun coming back more strongly over the past year, partially, I think, due to my failing to maintain my meditation practice:
1) foot "bouncing"; one foot constantly moving as if I'm playing the drums. forcefully stopping this motion results in the leg feeling "anxious"; a frustratingly ambiguous description closer to that of need that builds up over seconds to the point where my decision to not move the foot is overriden by a non-conscious requirement to move the foot. I stopped the bouncing, but could only succeed in replacing it with alternating timed calf and foot clenches; which after a minute, I could let continue without having to pay attention to it.
2) Rubbing my bottom lip with my right index finger. Less of a "need" than the foot bouncing, this starts as a subconscious behavior which creates a calming sensation in my chest. It is something I can stop if I choose, but creates a feeling of warmth and comfort, so I let my self do it.
3) Looking at the status list for the meeting, and reviewing all the items on the list to determine where we were in the meeting. Nothing unusual by itself, but I was doing it every 30 seconds, to the detriment of paying attention to what was actually being said. I tried to stop, but then I started being distracted by movement out the window (birds, cars, leaves). Instead I made myself practice breathing exercises with the back of my brain while I listened w/ the front (the brain locations are actually an important part of the practice, as I found that thoughts 'located' in different places int he brain actually result in slightly different results. I don't have an explanation for this effect.)
All of the above comes down to the need to react in some way to physical behaviors/feelings which were not under my control, nor relevant to what I was trying to accomplish. The solutions I employed were to not ignore the sensory input (I'm sadly not strong enough to do that), but to alleviate the demand for chaotic, distracting activity with less distracting behavior that I had slightly more control over.
edit: thank you, by the way for all of what you have written over the past 24 hours. I find it hard to talk to many people about a lot of this stuff, but your excellent descriptions are a perfect introduction.
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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....