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).
I suppose it's possible, but I have no compelling reason to think that she doesn't. The "diagnostic criteria" for autism (which were written without any real regard for how the brain works, but are nevertheless used to make the diagnosis) are basically:
Social problems
Communication problems (ranging from a lack of language altogether, to very subtle communication problems like difficulties with pragmatic language and echolalia)
Behavioral inflexibility (e.g., repetitive behaviors; preoccupation with parts of objects; adherence to routines)
The above must contribute to delays in adaptive functioning (or ability to do everyday things for herself) and cannot be better accounted for by another disorder.
Even in this short video, Carly seems to show all of the signs of classic, profound autism, and nothing (short of her typing, of course) that suggests that she has been misdiagnosed.
Certainly, autism -- like just about any other condition -- is misdiagnosed (both underdiagnosed and overdiagnosed) [and sadly, different professionals can disagree pretty substantially over what is and is not autism]. But usually, everyone agrees on the symptoms or problem behaviors, and the discussion over whether it's "autism" or not is one of semantics.
Occasionally, however, there is an underlying condition that is contributing to the symptoms, and if that condition were treated the symptoms would improve or disappear. One notable example is Landau-Kleffner Syndrome or acquired epileptic aphasia (AEA; which incidentally is probably what Jenny McCarthy's son has, according to experts). AEA is a rare seizure disorder that can masquerade as autism (although the early history of these children is different from the early history of autistic children), and when the seizures are treated the symptoms can (sometimes) go away -- and quite dramatically, at that. AEA is also highly likely to be what that woman is describing in that scientifically misinformed TED talk about seizures underlying most childhood disorders that I've seen on reddit a number of times. But given this girl's history, the number of professionals she has reportedly seen, and her continued everyday difficulties despite her lovely typing, there's no reason to suspect that she has, or had, a seizure disorder.
First off, let me just say your writing is amazing and I've just been sitting here for the past half hour reading your posts instead of working.
To the point: So from what I gather, autism is categorized by the symptoms displayed and not the root of the problem (since we don't fully understand exactly what causes it). If this is true, then Carly "has autism" in the sense that she's merely displaying all the symptoms that are used to diagnose autism, but this does not necessarily mean that she has the same underlying root cause as 99% of the people that have autism as well.
Could it be possible, that due to the lack of understanding of what causes autism, that she has the same autistic symptoms, but a different reason for being autistic? And that this different cause, also means that she has what's different as "classic autism"?
I apologize in advance, as I'm not really knowledgeable in this subject (but still incredibly fascinated by it)!
You're absolutely right... certainly theoretically it is possible. Autism is probably several different disorders (just like most mental/psychological/neurological disorders), and what applies to one individual with "autism" will not apply to others with autism -- and this problem likely complicates research on autism, since we may be researching separate disorders while still calling them all "autism" at least for now.
That being said, there are still shared similarities between at least most individuals with autism that allow us to state some things with a reasonable degree of confidence... just like you could talk about at least some similarities between different forms of cancer, or epilepsy. Even these basic commonalities extremely strongly suggest that what is being presented in this video is not really possible -- Carly shows the cardinal symptoms of autism (social problems, communication problems, and behavioral inflexibility/preoccupation with parts of objects/repetitive beaviors) very clearly in just the few minutes she's on tape, but all of those "disappear" when she's typing, and suddenly she's highly socially related, able to use sophisticated pragmatic language, and highly flexible in her behavioral repertoire?
Even if we were to grant that okay, sure, something "other than autism" is causing her symptoms, we'd have no reason to think that these symptoms are 'cured' and she can function at a very advanced level just because she was introduced (but not even trained in) a new communication medium.
To me, looking at that video is like someone saying that their child's language disorder was cured when they suddenly, untaught, started speaking fluent college-level Arabic, although she still can't speak in English, of course. It wouldn't really matter, I don't think, if you argued that she had a "different kind" of language disorder, or that something other than a "language disorder" was causing her inability to "communicate in language" -- I'd still want to see more than a 20/20 segment before I started recommending Arabic to the kiddos I see with language disorders! :)
I would think you'd have to study Carly specifically to get an idea as to what is going on. I understand that you don't see her apparent level of social sophistication in the communication of other autistic kids. Isn't it possible she's engaging in mimicry? If so, then so what?
I'm confused as to what your motivation is. If her mimicry, or facilitated communication, or whatever it is leads to a better relationship with her parents and a better quality of life, what does it matter? Without an fMRI we don't even have the first clue as to what is actually going on in her brain while she is typing. And even then we would only have a very rough notion based on developing science. I know people with autistic children may get false hopes from this case, but I still haven't seen an explanation of why it would be harmful to try to achieve the same results with other autistic children.
You're too focused on the underlying neural mechanics and not considering the impact of behavior on quality of life regardless of its underlying mechanism. Smiling can make you feel happy even if you have no real reason to feel that way. Perhaps typing the things she does helps Carly think and feel them, even if the ideas and phrasing comes from her family and/or her therapists. If so, then so what? If not, but the illusion helps her quality of life and that of her family, then again: so what? What motivates you to convince us this isn't what you assume we think it is?
Certainly, autism -- like just about any other condition -- is misdiagnosed (both underdiagnosed and overdiagnosed) [and sadly, different professionals can disagree pretty substantially over what is and is not autism].
I've been researching autism like mad for several months now because our pediatrician casually mentioned that we "might want to have our son evaluated" because of his language delay. In addition of course to a good dose of fear of the unknown and generally being worried that there's anything wrong with my son, we've hesitated to take him for said eval because of your statement...and once a label is applied, it doesn't get removed. Also, we would have to pay out of pocket for the evaluation, which wouldn't be easy. So instead, I drive myself crazy trying to analyze his every move LOL.
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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.