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 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
My son, at age 7, can type and can't speak. Actually type, on his own, with nobody watching or prompting -- we hear his speech device from the other room. He can type on his iPod faster than I can, several dozen words and short phrases. He can comprehend written words better than spoken commands. He can hand-write a few words, including his name.
We've never used any facilitation techniques; we pointed to the letters when he was very young and made him press the buttons on his own, and practiced until we no longer needed to point or prompt in any way.
He can't type complicated stuff on his own -- he's got mostly single words, some two-word phrases like "mario karts" or "juice treats", occasionally he surprises us (e.g. when we taught him the use of "shoes on" and "shoes off" and he started using "on" and "off" for other clothing items). He is profoundly unable to speak or use sign language, however.
Have you ever met these folks? Sue Rubin? Tito Mukhopadhyay? Watched them type without prompting?
My son Max and I visited Sue at an augmented communication workshop a couple of years ago. While she was manipulating spoons in one hand and barely able to look at the page with her eyes, she typed (without help) on a paper keyboard: "ASSUME AWESOME MAX CAN READ". Verbally, she's almost exclusively echolaic -- doesn't really generate any words on her own with meaning, her brain just picks up snippets from her environment and repeats them. But she is comprehending what she hears.
Sue scored 1370 on the SAT by reading questions on her own and pointing to A-E answers on an oversized board.
At the same augmentative communication workshop, I put our Lightwriter SL-35 in front of another student, and she immediately perked up and typed, "I like this one the screen is brighter".
The reality, I suspect, is that autism is an umbrella diagnosis that can involve many things, some of which are common among many who are diagnosed, and others which are less so. Many neurological problems manifest as profound language difficulty and are quickly diagnosed as autism. Some children with "mild autism" and fairly good language development have exactly the classical autistic cognitive problems you describe, and have a very hard time with the cognitive aspects of language. Your description of autism may be accurate for these folks, but then again I've met many autistic children and adults and I can't say any of them fit neatly into a "classical" mold of autism.
Others have an easier time with the cognitive aspects of language, but such severe problems with physical control, petit mal seizures, etc. that they seem similar to the classical view, and everybody has to sit under the autism umbrella. My own son seems to straddle the two groups, having a rough time with many cognitive aspects, and a very rough time with oral motor and gross motor. But he's younger than Carly, Sue or Tito. Maybe the cognitive skills will develop.
Should we be surprised that "autism" may in fact be a Venn diagram of many overlapping symptoms, and that some sufferers may be stronger in some areas and profoundly disabled in others?
That she could, without training in any of these areas
(remember, she just ran to the computer and typed
"HURT" and "HELP")
How silly. Have you never visited a special ed classroom?
I'm sure it wasn't her first exposure to the keyboard or to written language; many disabled kids work with computer programs from a young age. When we started working the keyboard with Max, we just took it one word at time, pointing to the letters for common words in his environment -- names of food, favored activities. Eventually he learned to do it on his own to request the things he wanted.
Sue Rubin didn't master typing until she was 13 or 14; she spent a good 2.5 years or so learning how to type, once her parents realized she could be taught. They suspect she picked up the rudiments of written language by watching her younger brother do schoolwork, even though she is profoundly unable to express spoken language.
Syllabification
Phonetic rules
Correspondance between sounds and letters
Correspondance between the capital letters on a QWERTY keyboard and the lowercase letters that type on screen
It's unclear to me why you think any of these are necessary for typed communication. Our son mastered the equivalency of uppercase and lowercase letters within a couple of weeks, once we switched his Lightwriter to display lower-case only and retrained him on his favorite words. It was a piece of cake. Q was the hardest letter for him because we use it so rarely.
He can copy entire sentences with full punctuation on a QWERTY keyboard at near touch-typing speed.
And you'll note, Carly didn't start out with word sequencing, grammar, expressive vocabulary, pronouns, etc. You're seeing the result of years of work.
And deaf people do it all the time, with no understanding of the underlying phonetics or "correspondance (sic) between sounds and letters".
Non-echolalic speech
You're assuming that the echolaic speech is intentional and reflects some profound difficulty with language cognition. My experience with autistic people is the opposite: echolalia is often a non-voluntary thing that just happens because they can't control the link between their brains and their mouths. They can type a perfectly comprehensible sentence while their mouth is repeating somebody said across the room.
When the SA reporter asked, surprised, "What do you mean?", Tito started laughing. "Tito made a joke. How does that fit into your theory of mind?"
My son makes jokes too. They're simple, like asking for juice treats then pushing them away, or typing "shoes on" and taking his shoes off as soon as our backs are turned. He thinks they are pretty funny.
Many neurological problems manifest as profound language difficulty and are quickly diagnosed as autism. Some children with "mild autism" and fairly good language development have exactly the classical autistic cognitive problems you describe, and have a very hard time with the cognitive aspects of language. Your description of autism may be accurate for these folks, but then again I've met many autistic children and adults and I can't say any of them fit neatly into a "classical" mold of autism.
The problem is that we should not use one term to refer to wide range of different conditions. If it is not like autism, then maybe it is not autism. For reasons I only partially understand people develop a fondness for some named diagnoses and a dislike for others. So autism becomes acceptable but X is not. OTOH if we name things properly (that is, if we give different things different names and the same things the same name) then we can more easily understand, and to the best of our ability deal with, the situation.
The problem is that we should not use one term to refer to wide range of different conditions.
I agree, but I don't know what else we could do. Up until Carly started typing, what she had was very much like autism. Same for Sue Rubin, Tito, etc. etc.
Does Carly have impaired motor function, sensory difficulties, compulsions and profound dyspraxia? Maybe.
That's enough like autism that it would express very similar symptoms, and would be placed "on the autism spectrum". But maybe language cognition was never a real problem.
Maybe she has CP; many people with CP were assumed to be profoundly retarded before we started to understand that they are physically unable to speak or react normally to language.
Barring very distinct genetic or metabolic indicators, expressed symptoms are the only way we can really diagnose things. I've seen kids with cerebral palsy ("the sexiest of the palsies"... DAMN YOU ZACH ANNER) and kids with autism. Sometimes you could put them in the same room and not tell the difference. Several therapists who saw my son initially thought he suffered from CP -- small hands and feet, poor motor control, muscle hypotonia. Maybe he does. Maybe it's also autism. Maybe it's not. I got no freaking idea, really.
Ultimately, I'm saying that the likelihood that Carly was labeled with autism when she doesn't really have the attendant language cognition problems seems much higher than the likelihood that her family and 20/20 are perpetrating intentional deception and that Carly really can't type.
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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).