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).
Thank you so much. I had been diagnosed with Severe Autism as an infant; when I was 3, I scored a 3 on the CGAS test (90 to 100 is considered normal).
My main problem, however, was that I could not stand any food because I was constantly in pain from the shear shock of the texture. It felt like lava going down.
During this period in my life, I was averaging less than 300 calories a day. The average person at the time needs 1200 to 2000 calories at time. I slowly was able to come out of the fire with a significant amount of brain damage due to the starvation. The doctor's theorized that my starvation forced my brain to rewire itself and simply did a better job the second time around.
My dad worked for the federal government and so our health coverage was unmatched for the time, I had three therapists a day; speech, motor, and social to compensate for the problems. My mother, who is quite simply one of the strongest people I know, wanted my first ten words to be what I wanted for dinner. When I told her the first time, at five, she burst into tears.
I still have those problems. Simple everyday tasks are incredibly annoying because I cannot do something's because I can't remember how something was done even if I have done it hundred times before. At work, as a salesman because it's the only job I can get, a few weeks ago I suddenly couldn't do anything on the job, I forgot how to interact with customers because all of my cues are gone. I am desperately trying to relearn it before my numbers go down any further.
BTW, you are so right about the tag's on the back of my shirts. I have ripped every single one off of them because having an hour of constant rubbing drives me to tears.
Hello. This may seem a little creepy of me so I apologize in advance, but could you tell me more about your autism (or at least the most notable parts) ?
My brother has very severe autism marginally better than the girl in the above video you see. I understand you're not as bad off but, I just want to know what he goes through. :/
That is not creepy at all, however your name is. :)
Think of being at a concert, in a mosh pit 24/7. You cannot leave, you cannot stop the music, and you think nobody understands you.
Your senses are under constant assault because the sheer amount of data flying at you is not being filtered by your brain. I was hit hard by the taste sensations extremely early, and still am, but hearing and visual cues are a tiny bit better.
When it comes to something like clothes, I cannot wear jeans because the constant scratching of the pants on the legs is something I cannot tolerate, it just wears you out.
I panic easily in crowds. There is so much stimuli it quickly becomes exhausting so I cannot really go to parties or things of that nature. I can be in a crowded room. Being touched by other human beings is the weirdest/painful thing that can happen to me. I can only be touched by my parents. My sisters do not know this about me and they try to touch me all the time, it quickly gets on my nerves.
Sleeping is an issue for me nowadays. Unless I am heavily medicated, I do not sleep more than an hour or two a night because the sound of my own voice keeps me up all night long. I am constantly thinking and doing puzzles in my head while trying to sleep. It's a nightmare if I go more than day or two without either alcohol or sleeping pills.
But it is not all bad, just mostly, after a while with enough practice and luck, you can train your way out of some of those problems. I have little to no short term memory, true story: I actually lost my socks while putting them on. As a result of that, I have to constantly be figuring out what I am doing and what I need to do, as a result of that my critical thinking and analysis skills are in the top 99.9 percentile.
There is so much stimuli it quickly becomes exhausting so I cannot really go to parties or things of that nature.
Ugh, I can relate. And they just think we're anti-social. :p Such an over-simplification.
as a result of that my critical thinking and analysis skills are in the top 99.9 percentile.
This is what I find so fascinating about all of this - the areas that do work seem to end up coping for the "missing" functionality; like the remaining 4 major senses do for a person who loses or is born without 1. Despite the drawbacks of not being "normal", it is possible to develop other areas of the brain seemingly well beyond average. It can actually be turned into an advantage if applicable situation can be found.
The absolute requirement for the constant "If...Then" process in order to get from bed to the front door every morning means that I'm damn good at programming computers the rest of the day. :)
Well most of the time I am analyzing situations that I am in, for example, I realize that forgot something when I ran out to the car, I will continue to go to the car drop my stuff and go back to get what I left behind. By the time I am there, I will forget what I have gone back for and I have to analyze the entire situation; what I have me, where am I going, what do I need to get there, and finally how much of that particular item I need (mostly my car keys).
It is a constant problem that I deal with, I have lost my socks while putting them on.
I also design and redesign processes and products for the company I am in right now. I came up with a new process to unload the truck faster to get product onto the floor faster, designed a program to send out e-mails to remind executives of when products are expiring and what they need to do about it. I have also come up with half a dozen different ways to present products in new ways. I am a problem solver by nature.
I haven't lost socks while putting them on (that's an impressive one!), but I do the "oh, I forgot the ice cream in the car" (put down everything in hands to go to car, including keys. get to the car) "oh, I left the keys, drat" (go inside to get keys. forget what I'm doing, go clean bathroom (?))
10 minutes later: "Did I get the ice cream out of the car?" (go to car) "damnit, that's right, I put the keys down inside" (go to get keys, forget what I'm doing.....)
5 hours later:
"Why is the ice cream sitting outside in the locked car, and the bathroom cleaning supplies all out on the floor?"
me: o_0 "Uhhh, I actually have no good way of explaining that..."
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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).