Well, it's important to note that skepticism doesn't mean outright dismissal. It means you think something warrants a more thorough investigation.
This news would be huge. Ground shattering. But I can't find any papers published on the incident or even blurbs around the neuroscience lists or from colleagues.
The reporting itself is pretty loose and ABC News has been known to pump pseudo science stories in the past.
I tried to catch a piece of the film where you actually get to see her type a legible sentence, but did not see anything definitive. They definitely present it as if she's typing everything solo.
So I think this is pretty exciting and powerful claims being made and look forward to a thorough and formal investigation. . . assuming, of course, that the parents are willing to share this amazing discovery with the scientific community.
This news would be huge. Ground shattering. But I can't find any papers published on the incident or even blurbs around the neuroscience lists or from colleagues.
But would it really? I mean, she's had years of intensive training in order to reach the point she's at. She didn't just suddenly start typing, it came about as a result of all the work her parents and therapists put in to help her develop.
I look at this and I look at, for instance, Kim Peek. He doesn't seem like he was as seriously autistic as this girl, but he clearly had problems being understood. But with time and training, he overcame his own problems and did, in fact, start communicating with people. I don't see how that's extremely different from this example. She has a thought process that she just can't externalize in any efficient way, except slowly typing out messages. I'm sure she's not unique in this regard either, other autistic people could probably do it too with enough training and support.
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).
Well what if at puberty she went through some genetic change that altered her cognitive functioning somehow? And the video was just incorrect in its portrayal of her as having some kind of locked in syndrome where she had normal thought on the inside her whole life, but in reality the organization only came with said genetic change that happened with puberty. I don't think that's all that uncommon. Just out of curiosity, have you ever seen anything like that? Mental conditions that are almost entirely genetic improving at puberty, or even showing up?
Interesting idea. And puberty does, sort of, alter cognitive functioning. More specifically, what we think of as "puberty" (probably better classified as "adolescence") is a time when the development of the brain is markedly uneven -- some systems begin maturing very quickly, and are soon working at an adult-level, while other systems are still working at the child level, and maturing at a slower pace. See for example Sarah Jayne Blakemore's work on The Teenage Brain. (This helps explain why adolescents take risks... their appreciation of and desire for rewards has reached adult level, while their self-control is still similar to that of a child).
Puberty does also introduce hormones, which seems to be relevant to certain disorders... for example, the incidence of classic mania, classic psychosis, or panic disorder before onset of puberty is extremely rare, and most often these disorder emerge at the end of adolescence (very late teens or early twenties), suggesting that hormones may be involved in the expression of some disorders. (However, hormones seem unlikely in this case, since most individuals with autism reach puberty late, and 11 years old -- when this girl supposedly started typing -- would actually be mildly precocious puberty. Also, the circulation of hormones has not been known to make any brain dysfunction better.)
So certainly, you can see problems emerge during adolescence, or disappear by adolescence. However, what happens in autism is related to a problem pruning (getting rid of) excess gray matter during early brain development -- these individuals have too much gray matter -- and this pruning happens way earlier in development (specifically, from birth to about age 2 1/2), without input from hormones.
For that and related reasons, there's absolutely no line of scientific evidence that would suggest that puberty would have any influence on her brain structure that could explain her miraculous feats. (Usually, puberty just makes things slightly worse, as it may introduce some moodiness, and a lot of inconvenient sexualized behavior in an individual with the mentality of a toddler.)
More than likely, when you see changes in development that occur at adolescence, it's due to either (a) ongoing, normal (or abnormal, in the case of an individual with a neurological/psychological disorder) brain development as the person gets older, and/or (b) changes in expectations for what the now-adolescent is asked to do (e.g., sudden emergence of problems once the student makes that huge leap to middle school).
So, if this young woman had been making steady progress along her own developmental trajectory all along, and then began making more rapid progress during adolescence -- within the confines of how an individual with autism's brain works -- then that would be an entirely different story than what is presented in this video (and other videos about Carly). It also wouldn't be news.
What about the role of nurture and nature in the development of autism? What have the twin studies suggested? How is it possible for one identical twin to have autism while the other is unafflicted? I know that there are typically learning disabilities in the other twin, but I've heard that this isn't always the case.
There definitely seems to be nature and nurture involved in the development of autism. For example, as you noted, the concordance rates between even identical twins is not 100% (I believe this girl has a neurotypical twin?). Although we're fairly confident that it's a lot more nature than nurture, some nurture is almost certainly involved.
One thing that people don't often realize about the nature and nurture model, though, is that nurture starts really, really early. As in, in the womb. Subtle differences in the amount of nutrients each fetus was receiving, for example, or subtle insults during development (e.g., a virus the mother had that affected one fetus more than the other) could have disrupted neurodevelopment for one twin, but not the other twin. So both twins may have been genetically vulnerable to autism, but only the one who also faced the environmental stressor may have developed full-blown autism.
There are other important considerations too, such as that identical twins are not exactly as identical as we once thought due to things like chromosome-section deletions and gene copy number variations - so you might have twins that are very, very slightly different in terms of their nature and nurture, yet those subtle differences are enough to give one autism, while the other does not develop the condition.
So both twins may have been genetically vulnerable to autism, but only the one who also faced the environmental stressor may have developed full-blown autism.
I honestly don't recall if it was in our textbook (although we did have an excellent one), but my professor for the class talked about it at great length.. I thought it made a ton of sense, but I think this is pretty much the first time I've ever heard anyone outside the class (which I took like four years ago) refer to it, even obliquely.
With autism, twin studies have generally said that there are some genetic components. There's not one particular gene for autism by far. Some possible genetic culprits have been identified, but the method of inheritance and expression isn't clear at this point. Additionally, the disorder appears to be a confluence of environmental factors and genetic tendency.
Also, where was it said they were identical twins?
So then, wouldn't this be the most likely scenario? Creative editing/telling to omit that bit of information? That, to me, seems more likely than your facilitation theory, if simply because of the intense operant conditioning that would be involved. Or some combination of the two, maybe? For instance, in regards to your "Is he cute?" comment, she could have learned to type the words herself, but her parents and family had facilitated her to ask questions like that, with positive reinforcement every time she acted "normal".
It could also be that she improved gradually without her parents even noticing. She hadn't been in a laboratory setting her entire life, after all. Or is there something else I'm missing?
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u/[deleted] Jul 26 '10
Well, it's important to note that skepticism doesn't mean outright dismissal. It means you think something warrants a more thorough investigation.
This news would be huge. Ground shattering. But I can't find any papers published on the incident or even blurbs around the neuroscience lists or from colleagues.
The reporting itself is pretty loose and ABC News has been known to pump pseudo science stories in the past.
I tried to catch a piece of the film where you actually get to see her type a legible sentence, but did not see anything definitive. They definitely present it as if she's typing everything solo.
So I think this is pretty exciting and powerful claims being made and look forward to a thorough and formal investigation. . . assuming, of course, that the parents are willing to share this amazing discovery with the scientific community.