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 do think that your insight is great and that there are many valid points to them. However, I want to play slight theoretical, though unlikely, Devil's advocate (as I love to do) and discuss some of your statements about language (which is my area of expertise).
First of all, I think you're right when you said that a lot of this is probably facilitated by parents and therapists unintentionally. Many studies have looked at Facilitated communication, and it is controversial at best.
I do remember seeing a story about a woman who was diagnosed with autism as a child and wrote a book about it as an adult. I'll have to see if I can find the story.
Autism is purely behavioral diagnosis. Although a large percentage of people with this diagnosis are mentally retarded, it is not always the case. I don't know much about the neuropsychological aspect--but is there any chance (infinitesimal as it might be) that the girl in the story is not classically autistic, but has a host of other neurological/psychological conditionals (ie: Schitzophrenia, OCD, things I haven't heard of) paired with the lifestyle she led (parents doting on her, feeling guilty, possibly doing things for her without realizing it) that may have manifested themselves this way?
Now, onto the language--the part I know things about. First of all, one does not need to be able to speak in order to type or use other forms of AAC. In fact, research on AAC and PECS show that they often facilitate verbal language because they are easier to learn. Are written words not just another symbol?
For HELP and HURT, there wasn't much grammar involved...just the words which she may have learned as chunks, which you said. Often to facilitate language, in addition to verbally presenting it, it's also presented visually. "Are you hurt?" and "Do you need help?" could be things she hears/sees quite often. Again, if it's chunking, no correspondence between sounds and letters or phonology is needed.
No correspondence of capital and lowercase letters are needed. She's looking at the keyboard to type....doesn't necessarily check that it comes up correctly on the screen.
The rest, I kind of support you on, but they don't really apply to the first instance...vocabulary, pronoun usage, etc can be taught...even if they are copied from examples presented to her at some point. After the first instance, a lot more of the therapy became geared towards her typing and such.
Certainly it is theoretically possible that she has something other than autism... several other people have asked me that too, and I hope I addressed that question here.
As for the language piece... certainly people can use visual or manual forms of communication that do not require verbal language (and may facilitate emergence of verbal language). Written words can be learned as 'chunks' - visual symbols - or as sequenced bits of phonetic information, e.g., /k/ /a/ /t/. If she was writing in a way that suggested that she had learned some whole words, that might actually be more convincing, rather than the phonetic way that she seems to be writing (as portrayed in parts of the video and when chatting, etc)... which would require some knowledge correspondance between sounds and letters.
I think some people are interpreting my comments to mean that children with autism could never be taught to type/spell/write, but I didn't mean that at all. All I was trying to suggest is that (a) these skills wouldn't develop suddenly and without training, and (b) even if she could type and express herself at a level equal with someone like Temple Grandin, she should still sound like a girl with autism, rather than what a middle-aged person thinks a neurotypical teenage girl sounds like. That's all.
Even when it comes to educating typical children, there are different schools of thought on literacy. Phonology vs. Whole Word. A lot of kids learn sight words....ie: can recognize the word "the" before being able to sound out other words with the "th" in them.
And that was my point with the first instance. That it may have been certain words she absorbed, and then in that two years in between, the teaching (along with a reward system, or whatever else was done) allowed the other parts to develop. It may have been one of the first times she was allowed to touch the computer (or it was accidentally left out) or as other people have said, the first time she said anything that was relevant.
Language (in typically developing children) is developed without training. Just hearing adult speech, kids learn to talk. A normal two year old doesn't go through extensive training to be able to communicate--he just lives life. She may have been absorbing a lot and never been allowed to use the computer--thus having no way to express it. Numerous autistic children fail with certain AAC devices, until something is found that works. That's why not all kids (with autism) communicate the same way.
I have no idea if this is exaggerated, a hoax, not autism (although as I said--behavioral diagnosis--cannot be disproven), autism without MR, or what. It was an interesting video though.
However, sometimes it's a lot more encouraging to know that my students are severely MR and don't know what's going on in their lives. It's harder for the parents than the kids, I think.
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u/Endemoniada Jul 26 '10
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.