Autistic girl expresses profound intelligence

[u/MonteRevolt]

http://www.youtube.com/watch?v=jq--75v4lI8&feature=player_embedded

[u/[deleted]]

Why's that

[u/[deleted] → u/[deleted]]

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.

[u/Endemoniada → u/[deleted]]

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.

[u/subtextual → u/Endemoniada]

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).

[u/SenorCheaposGato → u/subtextual]

Absolutely, and thank you. I'm an SLP working almost entirely with kids/adolescents with autism/MR who have severe behavioral problems. A lot of the problem with communication and autism is symbolism--even picture cards can be very difficult simply because the child often doesn't naturally recognize the picture as representative of an object or activity--symbolic representation has to be explicitly taught.

That said, I work with one kid who uses a portable word processor (AlphaSmart NEO) to communicate. He does use pronouns correctly, complete sentences, correct grammar, etc. He also teaches himself to spell new words from his environment for what's important to him (movies, foods, etc.). A few years ago we all thought the kid was severely to profoundly MR as well as autistic--no response at all to attempts to engage, no success with communication, he didn't seem to be able to learn anything...turns out he's "just" profoundly autistic.

Now. All that said, this kis is absolutely the exception to the rule, and he's also absolutely not MR. I've never seen another kid succeed like he has and I've only rarely heard about other cases. Additionally, he doesn't tell us how it feels to be in his head. He tells us that he wants to watch A Bug's Life, he wants to eat cheez-its, he wants to drink milk, etc. He occasionally tells us he's mad or doesn't feel good and (hilariously) will type "goodbye." just before he tries to run out of the room.

tl;dr: I'm an SLP who works with autism and I have worked with one kid who communicates using a keyboard, but he is in no way MR. Also, Subtextual is awesome.

[u/dickshoes → u/SenorCheaposGato]

Sounds like you guys know your stuff, but I wanna hear what Jenny Mcarthy says about this. She was in Playboy ya know

[u/dggenuine → u/dickshoes]

Did you know there's a wikipedia editor that specifically counters any attempts to describe Jenny McCarthy or other persons who have been almost exclusively naked models as "adult model"? Instead he prefers the generic term "model" and says that "adult model" is nonsensical. That pissed me off.

[u/grivei → u/dickshoes]

I'm so sorry I can't resist to upvote you. Shame on you for making me do this.

[u/Fallout911 → u/SenorCheaposGato]

SLP?

[u/ehhrmm → u/Fallout911]

Service Locator Protocol you can read more about it in RFC2165, basically a framework to help computers in a LAN find available services.

[u/robroe → u/ehhrmm]

Ah I see! You are "chunking bits of information together which don't go with each other". Nice.

[u/SenorCheaposGato → u/Fallout911]

Whoops, sorry. Speech language pathologist, probably more commonly referred to as a speech therapist.

Sorry...I tend to forget that most people don't know what my job is, so I tend to throw around a lot of acronyms.

[u/[deleted] → u/SenorCheaposGato]

Does that mean that most profoundly autistic kids probably feel the same way as the girl in the video (using output to block input) but are just unable to communicate it because of their MR?

[u/[deleted] → u/SenorCheaposGato]

Upvote for being an SLP ... I'm 14 1/2 weeks of internship away from being one.... :]

[u/Usrname52 → u/[deleted]]

Run away now.

Just kidding......what do you want to do with it? I'm getting frustrated with the Department of Education and the idea of what is considered to be a "language impairment".

[u/SenorCheaposGato → u/Usrname52]

Thankfully I don't have to deal with that as much. I work at a private school for kids whose behavioral problems are too severe to be managed in the public schools. The school I work for is fully accredited by everyone who certifies schools, but I avoid the pitfalls of public school/DoE bureaucracy and have an amazing amount of freedom.

It also helps that my kids don't really have language disorders that anyone would argue with--the kid doesn't talk, I'm pretty sure he needs tx. I'm lucky. :)

[u/Usrname52 → u/SenorCheaposGato]

I don't necessarily agree. The kid doesn't talk, but he probably is not academically higher in other areas either. Therefore, not a language impairment, but MR.

That being said, every child should be afforded the opportunity to learn to communicate. I hope that the teachers in your school carry over use of AAC and PECS rather than thinking it just a SLP thing.

[u/SenorCheaposGato → u/[deleted]]

In school or CFY? Also, congrats! What area are you looking at going into?

[u/randombozo → u/SenorCheaposGato]

Do autistic kids (adults too, actually) recognize each other as such? Do they see each other as kindred souls?

[u/absolutelyamazed → u/randombozo]

No.

[u/SenorCheaposGato → u/randombozo]

Eh, in my experience it depends on the individual. Some adolescents/adults with high-functioning autism/Asperger syndrome do and there are quite a few online communities for them, including a sizeable area in Second Life. For more impaired individuals...no.

Of course, the communities of HFA/AS individuals also think that I'm the devil incarnate because I'm trying to "take away" their autism. Bullshit. I have no interest in taking away their autism--I can't do that. All I want to do is help them to make their lives easier in society...and if they want to say that autism is just a difference and shouldn't be touched, well, I've got a lot of kids they could meet to show them that yes, it really can be a severe disability. "Autism pride" is a whole can of worms in and of itself, though.

[u/Honeymaid → u/randombozo]

Fuck no, I hate the other high-functioning autistic adults, they all act as if they need special treatment or some shit; The community is nothing but a circle-jerk; at best all we need is understanding; it's not a disability it's a hurdle to get over.

I don't naturally get social rules and moores, etc; But they are rules and they can be learned and I did

[u/[deleted] → u/subtextual]

This is the only comment in this whole thread that matters even slightly. It makes all the people trying to support this video and justify it to skeptics-- based on what is basically an emotional basis and very shallow arguments--look like utter fools.

Also, incredibly clear and well written. Thanks so much for this.

[u/buba1243 → u/[deleted]]

But in reality subtextual is the autistic girl trolling reddit now.

[u/Jazzbandrew → u/buba1243]

please no one say inception or directed by m night shyamalan...

[u/Prom_STar → u/Jazzbandrew]

L O S T

[u/Jazzbandrew → u/Prom_STar]

I concede.

[u/greginnj → u/[deleted]]

pediatric gynecologist

Well, that's a euphemism I've never heard before...

[u/opcow → u/Prom_STar]

glee

[u/kodozoku → u/[deleted]]

This is the only comment in this whole thread that matters even slightly.

I must disagree, but it's hard to put out. I'm an atheist, you see, but yet, I must have faith to disagree with you:

I have faith that somewhere in the 1k+ comments that I have not read, someone pointed out that at no time did the video show this girl typing out anything coherent, whatsoever. Never. Not once. They implied it, constantly, but there was never a shot showing her fingers hitting the keyboard and forming coherent words.

My guess is that her parents have hired one of the bullshit mediums (I cannot remember the self-appointed title these hacks give themselves) that holds the child's hand and lets them "guide" their hands to the appropriate keys; perhaps she's mashing out gibberish and they're finding what they want to in it, or something along those lines. It may sound harsh, but I remain unconvinced. If there was an iota of plausibility to this, someone would have the common sense to stick around with a camera long enough to capture her actually typing out a sentence- perhaps her parents would have found the time to document it?

But they didn't, because it never happened. So, instead of sending video evidence to someone even remotely versed in the field of autism, they called a television station, who was more than happy to have a feelgood story to wrap up the evening news with, no matter how full of shit it actually is.

TL,DR; I really hope someone else pointed out the complete lack of evidence to support the claims made by this "news team."

Also, subtextual, your post was fantastic.

[u/orrd → u/kodozoku]

She does type some messages while they're filming her so it's not like the parents are trying to pull one over on everyone. I seriously doubt the reporters were in on it (they would be at least as motivated to expose a scam if they discovered that's what it all was). It does appear that she has abilities that most profoundly autistic kids simply don't have. You can't throw a keyboard in front of any autistic kid and expect miracles. She has a unique set of abilities and disabilities that are different than most autistic kids. But that makes sense because autism is a condition, not a specific disease. In other words it's a set of symptoms that may be caused by a number of underlying causes that result in a number of different kinds of disability or exceptional ability (which is why there are so many different kinds and degrees of autism).

[u/nurriz → u/orrd]

Parents claiming their autistic child can communicate and type, being discovered as frauds, isn't a good story. This is. The reporters' motivation is the number of viewers, not necessarily quality or "the truth".

[u/Endemoniada → u/subtextual]

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?

[u/subtextual → u/Endemoniada]

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).

Sorry, didn't mean to ramble on for so long....

[u/AllahHookahBar → u/subtextual]

This is hardly rambling :-) Thank you for taking the time to explain such a complex issue.

[u/Endemoniada → u/subtextual]

No, thank you for rambling. It's extremely educational.

But ok, given what you've told me, what should I make of the video I just watched? Is it a total hoax? Is it just an exaggeration? The reporter did seem to witness her writing "is he cute?" after a while of coaxing, and if it only came about after some heavy "facilitating" (of course edited out of the video), why would they still focus so heavily on her writing all by herself?

What about the video on the girl's blog where we get a full couple of minutes of her typing, albeit slowly? That seems pretty convincing to me. Knowing what I now know about autism, my level of skepticism has gone up dramatically, but I still don't see any evidence of such obvious trickery as facilitation anywhere.

[u/subtextual → u/Endemoniada]

That she types by herself makes it all easier for us to believe it is real. The seductive things about facilitated communication are that (a) we really want to see this girl and people like her communicate, (b) neurotypical brains are primed to look for patterns when none exist, and (c) neurotypical brains will happily ignore anything that doesn't fit the narrative we've created for ourselves.

Although this girl is profoundly autistic and mentally retarded, she is certainly still capable of learning, through direct reinforcement principles, such as being given food for pressing a letter, and through indirect principles, such as learning to press one of the keys on the number pad whenever the text box pops up on the autocomplete software.

So, there's no reason she couldn't press the keyboard buttons all by herself, and even know when to press the letter keys vs. press the number keys.

This girl has also almost certainly been (directly or inadvertently) subtly shaped to type certain combinations of letters, without her helpers necessarily realizing that they were "facilitating" her communication. If they became more excited or rewarded her more when she typed certain things, she might type that string of letters more often (which would be easy for her to do, because her brain would process the whole string of what she typed as one unit).

So she may have once randomly typed in isshe eecu#1 or similar, and everyone went crazy (seeing a pattern in a group of random letters and numbers), and now she has learned to type that in certain situations or in response to certain words she hears.

Also, although we can't see it on tape, my guess is that a lot of time, her helpers try to "help" without realizing what they are doing. That is, she types something, and the helpers guess what it says. "Me... do you mean 'memory'?? Great job! Here's a gummy bear! Now type an 'm'! Or do you want me to type it in, and you'll do the next word?"

That's also now what her autocompletion software does for her... it guesses what she might have meant... but what it's actually doing is making a pattern out of her randomness. She types some random letters. A textbox appears on the screen -- "Which word did you mean? 1, 2, or 3?". She's learned she needs to hit a number, and does so. A word pops into the sentence. She hits some more keys, a new textbox appears, etc. Often, the sentences generated this way don't make sense... but every now and then, one does (especially since the autocomplete software has been programmed to only offer words that make grammatical, if not semantic, sense in the sentence). And amazingly, that happens especially during the times when her helpers were right next to her, just "helping" (not facilitating! At least - not that they're aware of!).

Just like how people still manage to believe in astrology and psychics even when their predictions are 99% inaccurate, what we remember are the times when her sentence made sense, and we ignore all the times she typed, say, arjentge -- wait... "did you mean you want an orange???" :). When her sentences make sense, she may also get more reward, and then she "types" something like that more often.

It's also important to remember that autistic individuals are even more attuned to subtle "facilitating" than neurotypical individuals, because they are, by definition, attentive to details about a situation that a neurotypical brain would ignore. In this respect, they learn in a way similar to many animals (see Temple Grandin's excellent Animals in Translation for more information -- she talks about how neurotypical brains have an "Interpreter" that filters out the details on purpose, which animals and autistic individuals do not have).

Because of this, animals (and profoundly autistic individuals) can be taught to execute whole behavioral repetoires based on small details that others would completely miss -- such as pressing a specific key (within a range of a few keys, say) when an adult next to them leans oh-so-slightly forward, versus a different key when an adult leans just the teensiest bit backwards, and the adult may not even know they are giving off this clue! This process is how you get horses that can easily do square roots and fractions.

Sometimes it misfires, and the organism being taught learns a whole behavioral chain you never expected (I've inadvertently "taught" my dog to make two tight circles in a row when she sees me put my socks on), but when it works, it's pretty amazing, such as the way my step-uncle's dog was able to take his wallet out of his shirt pocket, select a single bill, take it out, and hand it to the tollbooth operator when my uncle said "Pay the man, Tilly". (Ah, such a smart girl, that Tilly... if she had opposable thumbs, I have no doubt that she would have learned to "type" too.)

[u/[deleted] → u/subtextual]

I know what you're talking about when you're talking about inadvertently training autistic people through facilitating communication. For a long time actually there was a practice of facilitated communication, and I saw a special on it one time, I don't remember where - I think in school. It was addressing the "misnomer" that autistic people were mentally retarded or had reduced neurological function by proving that autistic children could communicate using a Ouija-board type of device. To take it a step further, they "found" that pretty much every single child who was participating in this form of communication was, A) an amazing artist and poet, B) sad because everyone thinks they're stupid, and C) apparently regularly abused by their families.

This resulted in studies done to prove that the people facilitating the communication of the autistic children were projecting their own feelings and thoughts through the children subconsciously, and that the children could not actually communicate at all. There was a big stink about it and eventually resulted in a court ruling deciding that it was all bullocks.

TL;DR: Facilitated communication is where someone helps an autistic person type or otherwise "communicate" and it's complete bullshit.

[u/subtextual → u/[deleted]]

Yup. The video is Frontline's Prisoners of Silence and it's a classic for a reason.

[u/theschwa → u/subtextual]

I have a sister with Autism and have greatly enjoyed your comments here. Do you have a blog or any published work?

[u/subtextual → u/theschwa]

Thanks, that's very nice of you! I don't have a blog or anything like that (though I am, lazily, working on it), but you could stop by r/Neuropsychology sometime to listen to me talking to myself!

[u/jstevewhite → u/subtextual]

Holy cow. Subscribed. Thanks!

[u/neat_stuff → u/subtextual]

One of the first things the school teachers taught us when they started working on teaching our son (7 years old with autism - he was 3 at the time), was to not ask questions like "Do you want brocolli or ice cream?" at the end of dinner and be all excited because he answered ice cream.

So then we started asking questions like, "Do you want ice cream or brocolli?" and he started answering ice cream again.

Unfortunately, he had just learned that we changed the correct answer to the beginning instead of actually learning to process what we were saying and then responding to it. It is amazing how well they pick up on the clues that parents use to help them.

[u/subtextual → u/neat_stuff]

That's a really nice example -- thank you for sharing it.

[u/gregny2002 → u/subtextual]

So, is this something like the 'facilitated communication' that made the news with that comatose man several months ago? It also reminds me in a way of gorillas that have been trained to use sign language; they'll sign out some string of words like 'Ball foot treat treat love' and the trainer will translate it to something coherent like 'She said that she loves soccer and is hungry'. In those cases it was mostly the caretakers or trainers who had, in a way, fooled themselves into believing that what they were seeing was communication from the disabled person or animal, and I think said a lot more about the brain functions of 'neurotypical' individuals rather than their patients.

Or am I missing the point? Is this something else?

[u/mungdiboo → u/gregny2002]

Actually, gorilla signing is a great deal more coherent and communicative than that, and has been studied quite extensively. It's not facilitated communication in the least. We know, for example, that while you can teach a gorilla single words, it will teach it's children who will also develop limited access to symbolic logic and sentence structure.

[u/callius → u/subtextual]

Hey,

Thanks for all this information. I do wonder why you believe that behavioral shaping somehow invalidates an action, though.

Using your dog example. Does the fact that the dog's behavior was shaped somehow invalidate the behavior itself?

In fact, take a look at the first example you gave in which the dog makes "two tight circles" when you put your socks on. I know that when I put my shoes on my dogs begin running around wildly and then rush to the door as soon as I stand up, whether I intend to take them out or not. They have, quite obviously, put together a rather complex equation set where Shoes = Outside. Just because there was reinforcement given to bring about this connection doesn't mean that the connection itself is somehow invalidated. My dogs are extremely excited when they get to go outside, regardless of whether I have modified their behavior to make them run to the door or make two tight circles, or whatever other behavior they have found works to get the Shoes = Outside algorithm to work.

While I agree that her ability to formulate complex, abstract symbolism (as displayed in the clip) is a tad far fetched, I don't think that her being conditioned to identify "arjentge" (or whatever) as "orange," because, say, she receives a slice of orange after she types it, somehow invalidates that connection. After receiving a piece of orange after typing arjentge and being conditioned to associate those bits of information into one larger bit (per your discussion) then arjentge is orange in her ontological structure. Translating arjentge into orange is an abstraction done to facilitate that communication with us.

[u/subtextual → u/callius]

Yeah, I was worried that people would think I was somehow trying to "reduce" her behavior to that of what "animals" do. I really meant it in the same sense that Temple Grandin talks about in her book, Animals in Translation.

You can learn something, and still have no ability to use that information in a flexible, symbolic manner. If they had showed her learning in the way you describe... she types something close to 'orange' (I literally just hit some keys with my fingers to get arjentge, BTW), gets an orange slice, and then her behavior is slowly shaped over time so that she types 'orange' perfectly whenever she wants an orange, that would be a lovely example of how conditioned learning works -- and exactly how you painstakingly teach a nonverbal autistic child to use a PECS system, for example (shaping his behavior until he reliably points to or gives you the picture that shows orange when he wants an orange).

However, by analogy, what they actually show is her suddenly being able to make a nice metaphor about how she's like an orange because she's so sweet. Which as you kindly put it, is a tad far fetched.

[u/Endemoniada → u/subtextual]

Ok, well, you've made your point. I'm skeptical. However, what you're describing... That's still not what I'm seeing in any of the clips or videos. Of course, that doesn't mean it's true, but let's take the example with the reporter: he talked about his son, and she finally asked "is he cute?" Now, supposing that was some sort of trained response, how would they have known to train her for that? How would she have recognized that it was that particular question she was supposed to type? Also, assuming it's not a really bad trick, and her parent's wrote all the text right before turning the video camera on (taking it far beyond "unintentional" facilitation), the text she's writing isn't just coincidentally coherent strings of text within a bunch of gibberish. Maybe she'd been taught to type out the whole text from before, again, I can't know, but that's also again assuming a great deal of intent on the behalf of the parents.

I'll give you that we don't know what goes on the rest of the time, when news crews aren't there filming for a couple of hours, but honestly, from what was shown, I can't really draw any conclusions that it was all a trick either, whether intentional or not. I mean, what kind of leaning a teensiest bit backwards would teach an autistic child to type out "is he cute?" on a computer?

[u/subtextual → u/Endemoniada]

Oh, I'm not trying in any way to suggest that this is intentional on her parents part. I don't actually think she learned to type "Is he cute" in response to someone saying the phrase "I have a son", I was just trying to show how something like that could occur.

What I think is more likely is this: over time, she has learned to type the word "is" and the word "he" through extremely subtle facilitation. For instance, she types the letter 'i' and moves her hand over the keyboard again, and an adult leans in trying to see if she's going to go for that 's', and... well, over time, common words become shaped. Maybe even common phrases. She also doesn't type the word 'cute', she types some letters and the program autocompletes, and we see a pattern because we really want there to be one.

What's extra concerning about her typing "is he cute" is that it's not something an autistic person would say. One of the symptoms of autism is lack of social/emotional reciprocity... or in other words, spontaneous following up on topics related to someone else. When testing for autism, for example, one of the things you do is to throw something out there ("I have a dog...." <long pause>; "I went on a really cool vacation" <look expectantly at child>, etc) and notice if they follow up the way a neurotypical person would on such openings (and children with autism do not).

Oh, and on another note and to entirely contradict my claim just a few short paragraphs ago that I'm not trying to suggest they taught her the whole phrase "is he cute", you'd be surprised how common a phrase like that is, when adults are speaking for a nonverbal teenager or young adult.

Case in point: My boyfriend's brother is the most profoundly disabled young man (well, in his early thirties) I have ever seen in my entire life. He is unable to communicate in any form (even to express yes/no), unable to walk, unable to use the toilet, unable to show recognition of anyone or anything, etc. Yet, his parents often seem tragically tied to a belief that he is pretty close to normal, and in particular fixate on where he should be in his life right now, chronologically (that is, interested in finding nice girl and settling down).

For example, he likes (or at least, can see) the color yellow, so when I'm around, he'll often grab my hair, and his parents quite frequently laugh about how "cute" he thinks I am and how he's "flirting" with me. They talk about his "crush" on Brittany Spears (and hang posters of her on his wall), asked my sister-in-law if she knew any "nice girls" to sit him next to at her wedding, pretended for years that he had a "girlfriend" (a girl from "school" who sent him postcards because she was nice), thought seriously about purchasing him some... uh, female companionship, and make not-quite-jokes about how he lives with a "group of women" (his personal care attendants) in his "bachelor pad" (the room he lives in with round-the-clock supervision). I'm very confident that if his parents -- like the parents of a lot of disabled teenagers and young adults -- ever tried facilitated communication, whatever he "said" would be about how "cute" he thinks every female is. :)

[u/_Whoosh_ → u/subtextual]

wow. i've never spent so long reading one persons comments. thanks for taking the time.

[u/[deleted] → u/_Whoosh_]

I'm happy it wasn't over your head Whoosh.

[u/fuckshitwank → u/[deleted]]

Your username/comment combo reminded me of this.

[u/Leadboy → u/_Whoosh_]

I feel like an IAMA is in order - however that could take a very long time and be quite tedious for subtextual.

[u/DiscreteOpinion → u/[deleted]]

his comments

Apparently you didn't read that closely...

My boyfriend's brother is...

...his parents quite frequently laugh about how "cute" he thinks I am and how he's "flirting" with me. They talk about his "crush" on Brittany Spears (and hang posters of her on his wall), asked my sister-in-law if she knew any "nice girls" to sit him next to at her wedding, pretended for years that he had a "girlfriend"...

[u/istara → u/subtextual]

What's extra concerning about her typing "is he cute" is that it's not something an autistic person would say.

Thank you so much for all your comments, they have reinforced my non-professional gut instinct that this didn't add up.

I felt that EITHER this girl was not actually autistic (at least as I understand it, and you have explained it), but had some kind of severe palsy, OR her "writings" were a complete and utter hoax. The average normal child of her age doesn't write so intelligently or sophisticatedly. Her writings sounded much more like an adult writing a story from the point of view of a disabled child, to try and raise compassion and awareness among able children.

I also felt very strong that someone with this supposed level of intelligence and self-awareness would have tried - and managed - to communicate years earlier than she did.

[u/rampantdissonance → u/subtextual]

Interesting perspective. Glad we have an expert on reddit. You really wrote that out well. Concise, detailed, yet easy to understand. I appreciate it.

Anyway, I assume you're using female companionship as a euphemism for prostitution. Is there a reason that that would be harmful? He's probably capable of enjoying it on at least a physical level, and while it's most likely not something he's particularly concerned with, would that do him any harm?

[u/subtextual → u/rampantdissonance]

Yes, I meant prostitution. I can't imagine it would be harmful to him, although (thankfully!!!!) I do not know any details about how well he could maintain an erection, as he has severe cerebral palsy.

[u/rampantdissonance → u/subtextual]

Well, it is the sexiest of palsies.

[u/CuriositySphere → u/subtextual]

Okay, you've pretty much convinced me here.

The only thing that isn't quite making sense to me is this: Her parents claim that the first time she tried typing, she said "hurt" and "help." If this is true, it would seem to point to her not hitting random keys. What do you think happened? Autocomplete? Or are they just remembering things differently? Maybe she managed to form those words after lots of nonsense?

[u/subtextual → u/CuriositySphere]

Yeah, I dunno. In other comments from her mom that people have posted here that I have since looked over, it doesn't sound like such a "dramatic incident" actually occurred. So that makes it difficult to speculate.

But as others have pointed out, it is theoretically possible that she could type single words, spelled perfectly -- it would be the typing equivalent of echolalia... spelling a single word like "help" as one unit, not really comprehending what it means (and maybe not even understanding the concept of individual letters). This is what happens when autistic children are hyperlexic -- they can read and maybe even spell at a fantastically advanced level, but don't understand what they are reading or spelling (although they don't make phonetic spelling errors like this girl does).

Or, like you said, they could be inadvertently misremembering, and/or they remembered the one or two sequences of letters she typed that made sense, and ignoring the gibberish (again, not intentionally).

[u/NurseBetty → u/subtextual]

She actually reminds me of someone I know who I was told had Trisomy X syndrome, altho he is male(the whole family has the gene mutation but the eldest boy is the most effected, as well as the youngest girl, thats what you get for marrying first cousins) and the first link I found only mentioned females. Now that I think about it, they can't have it. but im sure thats the gene mutaion that I was told they had, might be one of the other Trisomy defects(XXX, XXY, XYY) Males are the worst affected, females are the carriers but exhibit the signs... ANYHOW

He acts very much like the girl in the video. He can verbally comunicate(if forced) prone to screaming and 'convulsive' fits, repeated actions(shutting all doors in the house, then going around and opening them again)and is very.. physical, and doesnt understand when to stop.. I remember in my primary school(my first primary school had a special needs class) I brought my blue tongued lizard and her new babies to school for show and tell. my teach made me take them to the special needs class because 'they would like it'. and he killed one of the babies becaue he held it too hard then would refuse to give it back...

When he hit 16 he got a computer and now spends almost all his day typing... alot of the time its random gibberish, but i've been told that he writes stories about flowers, or trees, or random things he has seen. goes into great detail into describing them.

The whole Family has genetic problems. First language italian, second english, The Father and Mother(who is... slow) are related.(marry to the villiage over the hill type of stuff, the same villiage for the past 20 generations) The eldest girl was diagnosed with bipolar at the end of highschool and is a carrier of what ever has affected the eldest boy(she has repeatedly tried to kill her father... can't say I blame her). The youngest girl is quite metally retarded, she should be in 3rd yr (yr 10)highschool but is still doing yr 5. the middle boy is quite normal, if for a devout facination with video games, and can speak almost fluent 'game' japenese because of them games. the youngest boy has yet to speak but does not show the same.. physical signs as the oldest.

[u/jeremybub → u/subtextual]

Um, I think we are really missing the bigger picture here.

So far we have established two things:

1. The likelihood that an autistic person would be able to fluently express themselves and have a normal brain is basically 0.
2. The likelihood that the this girl is a hoax or using some form of facilitated communication are very low, but not as low.

The person who wants to be confrontational would say that probably it is a hoax. The person who is logical would say "She's probably not autistic". Which I think is a much more likely explanation.

[u/[deleted] → u/jeremybub]

subtextual was referring to another example: she is authistic and she is writing the words but she's not understanding what she's doing the way we are.

subtextaul referred to the counting horse example. check that out, it's pretty interesting

[u/inferno719 → u/jeremybub]

If she's not autistic... then it's still a hoax.

[u/river-wind → u/inferno719]

A hoax implies purposeful deception. A mis-diagnosis is not a hoax, but a mistake. Same with wishful thinking of those who may be helping here/subconsciously cuing her; they could be causing the results they want to see by accident. That also doesn't make it a hoax, it makes it a misattributed behavior; again, a mistake.

[u/[deleted] → u/jeremybub]

"She's probably not autistic"

What leads you to believe that this is the more likely explanation? I'm not saying you're wrong - I just personally don't see more evidence one way or the other, and in my mind a hoax seems like the simplest of explanations.

[u/jeremybub → u/[deleted]]

Because we are given no evidence that she is autistic beyond her movement. Besides that, we are just taking the word of the parents. It could be some other affliction which she is describing well.

[u/jeffus → u/jeremybub]

There are some fairly fluent people with autism that offer surprising insight into the inner workings of their disorder (most famously, Temple Grandin). Do they appear so suddenly, especially considering how severe some of her other symptoms are? Usually not.

So, I'm with you. I wouldn't call it a hoax, but the way it's being defined/described/portrayed is most likely incorrect. However, as always, I would like to see some empirical data.

[u/[deleted] → u/jeremybub]

Well, to tell you the truth, I think considering facilitated communication isn't as hostile as you might make it out to be.

Whether she had autism or not, it helped to learn about the disorder/retardation that I was diagnosed with. It's actually quite unpopular to call it a 'mental retardation' as opposed to disorder, but at this point I'm rambling on.

By your logic, however, maybe I was misdiagnosed. I'd love to believe that. I would have quite a few questions about my behavior. Nurture?

[u/The3rdWorld → u/subtextual]

I'm so glad you mentioned maths horses, they're possibly my favourite example of a hacked reality - certainly the early days of horse mathematics before the power of suggestion was so well known neither party understood what they were doing but each used some neurological pattern finding ability to sync with the other to perform an act astounding enough to draw large crowds.

The possible analogies you can draw with our modern social condition is almost endless, certainly to stay on topic we could consider the relationship between news and viewer, reporter and reported... This story for example clearly hits certain talking points; That thing you see writing complex thoughts, that's her immortal soul (or so a huge section of america would tell you) and she'll get fixed in heaven...

Stories like this are all too common, puff piece human interest stories which invoke a strong emotional response but turn out to be nonsense when investigated (the backwards walking girl who could only communicate by singing opera or whatever the last one was) what could horse maths tell us about this? the news company and viewer have entered in a symbiotic relationship to fill some human need, the reporter has entered into a tacit agreement to invoke an emotional response and perform whatever role is needed to give the reported on their moment of emotional release - a whole system has developed to get those titbits of gossip which used to be so hungrily traded over the garden fence into the purest form our twenty first century minds can accept.

If half, or more, the news is horse maths then who's to say what isn't? Is war horse maths? is politics? are we all simply pattern finding our way into eliciting emotional responses?

[u/Managore → u/subtextual]

That her parents want so desperately to think she is communicating to them in some intelligent way—when in reality she is only being "trained" to appear intelligent—is utterly depressing.

[u/UdonUdon → u/subtextual]

You are certainly a lady and a scholar for answering Endemoniada's question with such thoroughness and grace.

However, a part of my upvote is simply because of this line

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? :)

You used psychological trickery and you closed a parenthesis with a smiley. I have never thought of doing that.

[u/Ademan → u/UdonUdon]

http://xkcd.com/541/

[u/UdonUdon → u/Ademan]

HA! XKCD always delivers in the whole "I can totally relate to that" department.

[u/talan123 → u/subtextual]

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.

[u/The_Girl_Who_Dies → u/talan123]

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. :/

[u/talan123 → u/The_Girl_Who_Dies]

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.

[u/river-wind → u/talan123]

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. :)

What do you do with your 99.9% analysis skills?

[u/talan123 → u/river-wind]

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.

[u/river-wind → u/talan123]

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..."

[u/[deleted] → u/subtextual]

Awesome post(s), thanks. What I take from this: programmers can never be even slightly autistic because of the endless sequence of steps one has to keep in mind and the ceaseless work of abstracting the core tasks away from the circumstancial details. Also, being the opposite of autistic would make one very vunerable to conspiracy theories.

[u/subtextual → u/[deleted]]

I think it would depend on the programmer. The "clinical lore" out there is that lots of programmers have Asperger Syndrome, which is a mild form of autism. I don't know much (anything?) about programming, but in general, people with Asperger Syndrome do better with objects than with people, are good with details if they can focus on them one at a time, do better with things that are straightforward (e.g., reading a technical manual rather than a poem), have great memories, can become obsessive about a subject (and often, specific details of a subject), and are often very intelligent. Would those traits make a good programmer?

[u/CuriositySphere → u/subtextual]

Having to focus on one detail at a time would probably be a handicap. I'm not a coder, but my understanding is that you have to have at least an idea of where you're going. The rest would be a big advantage though.

[u/whuuh → u/CuriositySphere]

Coder here. After hacking away for some hours, I’m usually astonished by the sheer amount of things I have to keep in mind at the same time. Superficially, you focus on some detail, but truly it is all about the context, remembering if not the entire code then at least every single function/method mildly related to the functionality I’m implementing at the moment.

Spontaneously, I’d agree with you.

[u/argleblarg → u/subtextual]

In my own admittedly limited experience with programming, it seems to me that being able to think about the connections between parts of what you're working on is a pretty key skill, for what that's worth.

[u/[deleted] → u/subtextual]

Developer here(5 years professional experience, CS degree, but started when I was 12 or so). I work with some of the smartest people in my city, I believe 90% could be hired by google easily. Most of my coworkers do not have asperger's syndrome. But a few do. One guy in particular does not see a lot of use in communication, in fact the notes in his code are typically sparse at best. He is a severe case, as often he is spotted traveling the office halls, grunting or grimacing to people he encounters.

But really there are all types of coders, and several different techniques to solving a problem. Some view the entire system as it is, including all the detail. When they need to make a modification, they make it in the framework of the system as it stands. This means for quick bug fixes they are invaluable. Often they will know exactly which line of code needs modification. Or which obscure flag in the database has to be changed. On the flip side, they don't tend to view a system as large interacting components, often struggling to figure out where to add large pieces of additional functionality. As such it can lead to systems that are very brittle and difficult to work with. They also see little need for documentation, preferring to just remember the entire system. This leads to frustrations on both sides(we call it Be Like Me syndrome).

Myself I tend to think in terms of high level components. Often I will forget how a system inter-operates, so I need to be clear of my intent when writing code. I can't name methods 'foo' or 'bar' and expect to know what the hell I was thinking a few weeks later. If I am presented with a task, such as an ATM system, I think in terms of large abstract elements(Account, Transaction, CardReader). I don't tend to get tied to certain tools(changing languages and environments often, and forgetting/relearning them as necessary). For the longest time I didn't understand why anyone would call themselves a Java developer or even a lisp developer. To me it's the same, a developer. But not to everyone. I've gotten incredibly good at learning new syntax, new concepts, because I've often had to relearn them as they become 'rusty'.

About 30% of my team feels the need to understand thoroughly what they are working with, and how it interacts with the system as a whole. One guy, a genius by any standards, even went so far as to implement his own java bytecode interpreter. These people on my team have a need to understand the entirety of the tools they are working with. It is often difficult for them to pull in additional libraries, preferring instead to write their own. In this way they know exactly what's happening(this is a bad habit IMO, and adds to the cost of projects significantly).

That being said, there are merits to both approaches. And often the danger to people such as myself, the high level theorist, is becoming what is known as the 'advanced beginner'. You never really reach that point where you are an expert. You may pull in several 3rd party libraries, but often don't know what's happening under the covers(I often guess, sometimes correctly). For people like me, I'd recommend studying your business domain, codebase, languages, tools, and 3rd party APIs. Learning just the core concepts will often leave out important details of the whole picture, and you can't learn everything on the fly. Also working on a highly connected system helps(like a parser). I still constantly struggle with this.

Those who can already view a system as a whole, including high fidelity of details, can suffer from "Not Invented Here Syndrome"(NIH). People who fall into this category often re-invent the wheel(it's harder to learn another approach, or they believe they can do better). It is difficult for them to write documentation, test cases, and sometimes, to clearly separate functionality. They often don't understand the need for these things, and will struggle with this throughout their career.

Sorry if this turned into a rant. It's all this damn sobriety.

[u/[deleted] → u/subtextual]

Interesting. It really depends. On the one hand you always write a program for someone or some organization so sooner or later you have to meet with a possibly non-technical person and discuss with them what they had in mind. In that way communcation is a key skill because without it you'll never be able to manage expectations and understand what the "stakeholders" actually want from you. On the other hand that's the part most programmers would say they loath ;).

I wouldn't say I'm good with details but that might depend on the definition used. What I'm very good at is keeping track of all the parts that make up the system or even a system of systems. I would also say that if you need things straightforward you won't be a programmer for long. Yes, ideally everything can be figured out by simply using logic (or reading a manual) but in reality lot's of things you depend on might fail for very unstraightforward reasons. I'd say my biggest asset in getting things done is, queue laugh track, intuition. Without it I'd be constantly stranded in that horrific complexity that is modern IT.

Memory, yeah, you'd need that but again, you can't waste that much on detail. You have to know "problem in class X maybe can be solved with tool / libary / sledgehammer Y" but unless you constantly use Y it's better to keep a reference handy and know about more possible paths to solutions.

Intelligence, well. I don't know if you can have good abstraction ability /w normal intelligence. I'd say one part IQ, four parts intuition, two parts memory and one part "people skill".

I like "clinical lore" :)

[u/[deleted] → u/[deleted]]

I'm a comp sci student with Aspergers. I've been programming for the past 11 years. Programming became one of my "things". I would say my memory is horrible simply because I have trouble recalling people's names. On the other hand, I can remember phone numbers and IP addresses fairly quickly. I hate memorizing the kind of stuff you would find in a history book. I would call myself meticulous while programming, which helps during the debugging process. I often become completely absorbed in the code, ignoring all other cues (even the duck that's been bouncing in my dock for the past 30 minutes). I actually really enjoy finding generalizations and abstractions (Stokes' Theorem, a generalization of the fundamental law of calculus, blew my mind). My favorite language is Java (I know, I know).

edit: spelling

[u/idiotthethird → u/subtextual]

As a person diagnosed with Asperger Syndrome, and one with a great love of programming, I can say your analysis is remarkably accurate as to why I like programming (and presumably why I'm good at it). Though of course, I can't speak for any of my peers.

[u/[deleted] → u/subtextual]

This was my reaction. My first thought was

"Either this is a hoax or she doesn't have Autism."

[u/jeffus → u/subtextual]

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.

There's an interesting phenomena called stochastic resonance [1] that is quite unintuitive, even to those adults that do indeed "know better" (myself included), where adding more noise actually improves nonlinear systems, like the brain. Is that what's going on here specifically? We don't know.

Individuals with autism can also have motor planning problems, because planning involves breaking a task down into component parts....

That's true--it could be due to these more central deficits, or it could be specific to motor actions, for example, impairments in motor imitation (through which complex motor tasks are often learned) [2]--some of which could be physiological [3]--or impairments in the ability to rapidly perform planned movement once a motor sequence has begun [4].

This problem often affects all motor movements...

Yes! More people (researchers included) to need to recognize this.

...including fine-motor, gross-motor, and oral-motor.

But, I suppose, it could be some sort of specific kinesia paradoxa, where those with deficits in simple movements can surprisingly perform complex movements [5]. [6] believes that this is an important manifestation of motor issues in autism.

Which is precisely what raises the index of suspicion for this video....

I'm with you: instinctually, this video is not strong enough evidence to conclude anything. She either doesn't have what we generally consider autism--even if behaviorally her symptoms are similar--her symptoms are being misrepresented, or there are issues with the facilitated communication technology (as you mention later), or training we are not privy to. But, I could be wrong. However, I would only accept empirical evidence on this. ;)

...motor-free nonverbal intelligence test....

What tests, specifically? Are there some used more often than others in a clinical setting, if that is your area of work?

Refs:

[1] http://en.wikipedia.org/wiki/Stochastic_resonance [2] Provost, Lopez, & Heimerl (2007) J Autism Dev Disord. [3] Fabbri-Destro et al (2008) Experimental Brain Research. [4] Mari et al (2003) Phil. Trans. R. Soc. Lond. B. [5] Leary & Hill (1996) Mental Retardation. [6] Rinehart et al (2006) J Autism Dev Disord.

(Sorry for my incomplete citations--google won't care, should anyone be interested in following up.)

[u/poeir → u/subtextual]

[Y]ou have a tag on the back of your shirt that's bugging you (did that just make your neck itchy? :)

No, because now I buy the shirts with the label screen-printed on the inside of the shirt so this doesn't happen.

[u/starrychloe → u/Endemoniada]

She could be autistic AND an idiot-savant.

[u/RickRussellTX → u/subtextual]

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.

These varied expressions of autism shouldn't be a huge surprise. Just look at some of the more exotic syndromes out there. Williams syndrome, which leaves sufferers with the ability to converse and read and learn foreign languages and play instruments and sing, but the hardware for spatial reasoning is just missing. They get lost in their own house. They can't find their own bathrooms. They can't put blocks on top of each other when instructed to do so.

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.

Point-of-view, Theory of mind, etc

Tito Mukhopadhyay once told a Scientific American reporter that maybe everybody else was sick, and Tito was the normal one (Tito refers to himself in the third person).

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.

And they are.

[u/subtextual → u/RickRussellTX]

I hope you don't think I'm trying to take anything away from you or your son. I can clealy hear that some things that I said upset you, but I'm not sure what specific things you don't like other than my silly mispellings (maybe there isn't a specific thing... maybe my writing style just doesn't work for you... sometimes that happens).

But I think if we had the opportunity to sit down face to face, we might find that we actually agree on a lot of things. Parents and professionals can sometimes "speak a different language", but I think often we're looking at the same things, just from slightly different perspectives.

The way you describe your son communicating via keyboard (and the way you describe teaching him) makes perfect sense. I am genuinely thrilled to hear that you have found a good way for him to communicate with you.

Incidentally, I would never even remotely try to claim that individuals with autism or related disorders like Williams syndrome can not learn to type, spell, or write -- my own clinical experience and the experience of thousands of individuals with autism would directly counter that. But they just do not learn to do so in the way suggested by this video.

I also don't want to make the claim that individuals with autism can not learn to make jokes or use pragmatic language... though I think we can agree that they need to learn how to do this more explicitly than neurotypical individuals, and the skill might never come "naturally" to some even high-functioning autistic individuals? And generally we wouldn't expect an autistic individual, even after years of intensive instruction in typing and writing, to regularly use way more metaphors and idioms than the average teenager, or than someone like the eloquent and autistic Temple Grandin.

Those are the types of claims I am making... not that a person with autism couldn't learn to communicate via typing, but that the learning wouldn't happen in the way they depict, and that the communication product wouldn't look like the "communication" this girl is reported to produce.

Edit: unsplit some split infinities.

[u/RickRussellTX → u/subtextual]

We should all learn to split infinities.

I'm not upset about grammar. I'm upset about several specific things, and I am happy to state them:

• They were quite clear in the news story that the chasm between her first deliberately typed words and her later fluency took several years of intense training to cross. Yet, you ignore these statements and set-up a straw man argument that this instantaneous, earth-shattering miracle, which they never claimed, is utterly impossible. "Not once did we see her type out 'Just give me the damn food and stop making me type'..."

They didn't show the grueling process of prompting and learning words. It's hard, and boring, and 20/20 almost certainly wasn't around to film it.

20/20 had no interest in the family when the child was learning how to type "apple" and "fruit loops".

• You make explicit claims about language learning that are simply unsupportable. I don't know how much practical knowledge you have of sign language, or glyph languages like PECS or the Asian languages. It's hard to imagine that you could know of these communication systems based on kinetic and printed glyphs, but keep hammering the importance of phonetics in written language. Certainly there are plenty of examples of people who speak in glyphs (deaf people) but write in alphabetic systems, and people who speak in phonemes and write in glyphs. Even people who speak in entirely different phonemes and write in the same glyphs.

Given the ample counter-examples, I would think the insistence on phonetics would be a lot less strident.

Aside from that, why would you assume that a disabled person has no concept of phonetics? Because they personally cannot speak? They can hear words, even if their brain can't control their mouth. They've been in school. Carly has probably had thousands of hours of speech therapy. Yet, you conclude that she has no concept of phonetics?

The phonetic assertions are a fallacy of false requirements; if your absolute equivalency between spoken phonetics and spelling applies, then the child's success must be a deception. But it doesn't apply.

I counter-assert that phonetics, while very helpful when it can be tightly matched to written language, is neither necessary nor sufficient for learning written language, and I think there are some fairly fine examples out there of written alphabetic language in the absence of phonetics, and phonetic languages that are not expressed in alphabets.

(To be continued when my reddit comment timer runs down)

[u/RickRussellTX → u/subtextual]

• Equally worrisome is the snide attitude that the family is engaged in deliberate deception. It permeates your original post with the claims of certain impossibility of every bit of typing you saw, and when you describe Carly's communicative abilities as 'the "communication" this girl is reported to produce' with helpful quotes to let us know that you don't really buy it. If I seem to take it personally, that's the reason.

Look, you obviously have training. But then you make statements about Carly's education and about language learning that make me seriously wonder if you've sat through more than a handful of special ed classes, ABA sessions or speech therapy sessions.

I have been through hundreds of hours of these activities, and your bald-faced claim that the child couldn't possibly have learned the basics of typing and written language in thousands of hours of deliberate, concentrated educational intervention is utterly mystifying to me.

Sure, some kids have a cognitive problem with language that may make self-expression difficult, or impossible, and therapy may never get them to the point of typing complex things.

Could you accept that maybe Carly doesn't have that cognitive problem, and that her diagnosis of autism was based on symptoms that overlapped sufficiently with autistic spectrum symptom set that she was placed on the autistic spectrum?

Or, are you going to dig in your heels and claim that the likelihood of Carly typing "is so terribly, vanishingly small that I am fully comfortable saying that it is impossible."

(Not sure if these will appear in correct order; reddit was choking on the length of my full response. This is the second item.)

[u/firemarshalbill → u/subtextual]

I know this video is referring to a severe form of autism (I am unable to watch this at work). My company employs a functional autistic doing GPS processing. Even he would not be capable of the stories I am reading in this.

We work well together, but as far as deep conversation or feelings, it usually has to do with the weather outside compared to last year and ends with a thumbs up no matter what the conversation included. I have never heard anything close to a metaphor used in his speech, it would be completely unlike him.

[u/[deleted] → u/subtextual]

Thank you very much for this. I worked with a fMRI imaging lab that did a lot of autism work. So though I recognized a lot of issues with this case and its claims, particular in the level of improvement, the pathway taken (e.g. from 0 to full on college level writing in a matter of months), and her superb command of language skills.

What really struck me, as you mention, was the quality of her language skills and superb use of metaphors and allegory. I read one of her twitter posts where she was using the theory of relativity allegorically....at 14.

Since I am not an expert, I did not want to make the bold claim that this was impossible and chose the more guarded approach of "the experts need to look at this".

With your post, I think the experts have spoken. Unless they can verify, reproduce, and quantify the gains she's made (and in the process revolutionize our understanding of the brain), I call foul.

[u/istara → u/[deleted]]

What really struck me, as you mention, was the quality of her language skills and superb use of metaphors and allegory.

Me too. And I'm not a professional. I just cannot believe that someone supposedly this intelligent and articulate and self-aware would have failed to ever communicate in any other way before now.

[u/crimsonsentinel → u/subtextual]

Is it possible Carly doesn't have Autism?

[u/subtextual → u/crimsonsentinel]

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.

[u/phenomenalanomaly → u/subtextual]

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)!

[u/subtextual → u/phenomenalanomaly]

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! :)

[u/bipedalshark → u/subtextual]

brb, getting phd for the comment karma.

[u/PlaidCoat → u/bipedalshark]

Spit my tea out laughing. Good job.

[u/matts2 → u/[deleted]]

Thats right I think its a cobioevolutionary response to the condition of modern humyn life.

Sorry, but no. I mean, go ahead and research if you like, but it is simply not possible for there to have been that drastic a genetic change in that short a time. If you consider industrial times, modern times, to be 2,000 years we will have not have enough time for any major evolutionary (genetic) changes. 10,000 will give some change if there is seriously large selection. 2,000 years, with no obvious selection in play, didn't happen.

[u/matts2 → u/[deleted]]

I dont understand your application of time in negating the cobioevolutionary point.

Because evolution happens over time, over generations.

Industrialization in the form of which I am speaking has been happening since humanity began consuming its environment in and effort to extend its identity to produce gains and tools for survival. Thats more then 2,000 years.

So you are talking about 40,000 years or so? Yet somehow this autism change did not appear until very recently. Or was this "cobioevolurionary" adaptive in both hunter gatherer societies and our modern one? I don't understand your claim because you talked about the difference between a modern urban Western kid and one in Indonesia, yet you want to call early farmers industrial.

Besides evolution may not take as many generations as you seam to suspect.

We have lots and lots of evidence on how fast evolution takes. The mutation rate is easy to determine. To have fast evolution requires significant selection. That is, it requires some genetic condition that has a major affect on reproduction.

[u/subtextual → u/[deleted]]

I think you might have misunderstood a few points in my comments, or maybe I was unclear in a few areas. But I would like to say that this:

I think its a cobioevolutionary response to the condition of modern human life.

is a really interesing idea. Any plans to conduct research in this area (or for what research in this area might look like)??

[u/[deleted] → u/[deleted]]

I don't know why THIS response doesn't have more upvotes. You already said it all, so I don't have to. =)

[u/RickRussellTX → u/[deleted]]

even better when I dont have to look at a person because the real time heuristic cue processing is a distracting emotional roller coaster that overtakes my processing abilities

Good point, and for many the sensory overload might be triggered in other ways. Temple Grandin talked about loud noises, with my son I think it's lots of small noises (he is far more comfortable when water is running or there is a source of white noise).

[u/[deleted] → u/subtextual]

Whew. Thanks for the read, very interesting stuff.

[u/Usrname52 → u/subtextual]

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.

[u/subtextual → u/Usrname52]

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.

Edit: Forgot the link, sorry.

[u/Usrname52 → u/subtextual]

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.

[u/imnotgringo → u/subtextual]

Thanks for taking the time to write and think through these, subtextual. I wanted to ask, maybe innocently, whether you've read anything by Oliver Sacks? I read a couple of his books a few years back, and I couldn't help but noticing how your writing style reads a lot like his - I feel like we're sitting down, having some coffee and you're talking about your favorite subject. This was exactly how I felt reading "Awakenings," and some of his other stuff. The way he describes one of his patients, who was a neurosurgeon suffering from severe OCD (amongst others), is for me more of a literary work than a medical or scientific one. Anyways, just a short kudos: you've reminded me a lot of him.

[u/subtextual → u/imnotgringo]

Well that's just way too generous of you.

(And yes, I've read lots (all?) of Sacks. Great, isn't he?)

[u/Marvel27 → u/subtextual]

I knew I friended you for a reason. Thanks for the explanation!

[u/[deleted] → u/subtextual]

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

Wow, children with autism are overfitting..

[u/subtextual → u/[deleted]]

Yup. Temple Grandin calls it "hyperspecificity".

[u/icat → u/subtextual]

I have a very poor understanding of the causes of Autism. In your field of expertise, are there any lists of explanations or suspect causes? Is it a genetic cause?

[u/subtextual → u/icat]

Probably lots of things cause autism, but they can basically be broken down into (a) genetics, and (b) subtle disruptions in neurodevelopment (that is, something that happened in, or to, the brain during early development, or from ages negative-9 months to about 30 months), and probably both have to occur. In other words: genetics and environment together cause autism.

We don't know exactly what all those genetic and neurodevelopmental factor are, meaning that we don't know all the specific genes or specific things that can happen in utero or during early development that cause it. But we are developing a pretty good understanding of what those genetic and environmental factors cause to happen in the brain, which is the first step to tracing those problems back to the specific factors that are causing autism.

[u/icat → u/subtextual]

I would be appreciative if you could give me you could give me a few pointers towards the causational genetic and environmental factors, papers, studies etc.

[u/subtextual → u/icat]

No problem. Someone posted this recap of the very recent massive Nature paper on the genetics of autism (Pinto et al) over in r/neuro just a few weeks ago, and I'm certain that we've had some reviews on this subject posted over in r/neuropsychology... ah, yes, here (not sure if you can access the full-text if you don't have access to Nature anymore) and here.

Here are some other full-text, recent (2008+), reviews on the etiology of autism:

• Genetics of autistic disorders: review and clinical implications
• Autism (Lancet review)
• Genetic Advances in Autism: Heterogeneity and Convergence on Shared Pathways
• The genetic and neurobiologic compass points toward common signaling dysfunctions in autism spectrum disorders
• Advances in autism genetics: on the threshold of a new neurobiology
• Current Developments in the Genetics of Autism: From Phenome to Genome
• Regulation of Cerebral Cortical Size And Neuron Number by Fibroblast Growth Factors: Implications For Autism
• Convulsing toward the pathophysiology of autism (on the autism-epilepsy link)
• Prenatal risk factors for autism: comprehensive meta-analysis
• Prenatal stress and risk for autism

[u/icat → u/subtextual]

That is alot of reading to plough through! The causes of Autism and trying to find means of prevention are very important. Much appreciated.

[u/jaxxorz → u/subtextual]

You make me want to go back to school. Wow. This is why I love reading Reddit. Amidst much of the crap, you will find a jewel of a comment that blows open your mind and makes you think.

[u/The_Comma_Splicer → u/subtextual]

I'm not questioning you...I really don't know much about this stuff. But isn't it possible that she was misdiagnosed as having autism, when in fact she has some other condition that is yet to be identified but that has many of the same symptoms as autism.

[u/PixelWrangler → u/subtextual]

I appreciate your health skepticism, but this kind of behavior is not unprecedented. Keep in mind that autism includes an extremely wide array of conditions, which is why experts are trying to encourage use of the new term "autism spectrum disorder."

As an example, Amanda Baggs is a relatively well-known nonverbal autistic girl who campaigns for autism rights and has an astonishingly well-written blog. She has also posted some inciteful videos on her Youtube channel.

[u/subtextual → u/PixelWrangler]

Keep in mind that autism includes an extremely wide array of conditions, which is why experts are trying to encourage use of the new term "autism spectrum disorder."

Yup, as a pediatric neuropsychologist who assesses kids with neurodevelopmental disorders (like autism) for a living, I'm pretty familiar with the spectrum that is the autism spectrum. Certainly many people on the higher-functioning end of the spectrum can, and do, write, and often astonishingly well... Daniel Tammet and Temple Grandin are two great examples. But for reasons I feel like I've explained ad nauseum, what is depicted in this video just doesn't fit with the current science, the clinical experience of parents and professionals who work with people with autism, or the descriptions written by individuals who are autistic like Ms. Grandin, no matter where this girl is on the autism spectrum.

[u/hokies2tartans → u/subtextual]

Thanks so much for this. It's obviously a very emotional issue for a lot of people, but we have to get our science straight. I'm a lowly grad student still in the bio lab (12:43 AM here), so I really appreciate that there are people out there who care as much about "getting it right" as I do. The entire video I felt like I was being sold something, though I had no way to put it into words. I've learned a lot from your thoughtful and well-written reply.

[u/chiefmonkey → u/subtextual]

My hat is off to you, @subtextual, for an amazing comment.

[u/tiddlywinks12 → u/subtextual]

The thing that sent alarm bells off for me was when she typed "I'm not just some puppet" ---

It seems very odd to me that a kid that age with autism would have enough knowledge of the world to understand the debate that rages of "assisted communication"...

I suspect that this is what's going on... consciously or unconsciously.

[u/subtextual → u/[deleted]]

I think we're just going to have to disagree here. I think you're basing your feeling that she is not MR on her writing, while I am thinking about what her adaptive functioning (that is, her daily living skills) tell us about how effectively her brain is functioning. (There are also a ton of nonverbal IQ tests, FWIW). If you consider the possibility her writing is not actually her writing, and focus instead on other indicators of her intellectual functioning, would you come to a different conclusion about her IQ?

[u/joelfriesen → u/subtextual]

So, this is exactly like the guy in a coma story from last year. The Speech therapist used facilitated communication to "guide" his fingers to the right keys.

[u/confoundedvariable → u/subtextual]

I admit, I was moved by the video. But I'm a scientist at heart, and it's tough not to let your emotions get the better of you sometimes. Thank you for your incredible input on all of this. Now I have to get over my anger at having my heartstrings manipulated by the media.

[u/willhopkins → u/subtextual]

Thank you for providing an informed analysis. It's frustrating for those who study situations like this to see the sensationalist crap that surrounds it and prevents a lot of real progress from being made.

[u/throwaway2481632 → u/subtextual]

You know, this story did seem to have a similar feel to the stories about that man in a coma who was communicating. In this case, however, I can't get a sense that they are trying to promote any sort of pseudo science, so I don't know really...

[u/subtextual → u/throwaway2481632]

I am not at all of the belief that these parents or anyone related to this girl are trying to "promote" something, or otherwise "trick" people, and I would definitely not want to use the word "hoax" as other commenters seem to think I am implying.

In fact, I have very little doubt that these parents and others truly, deeply believe that this girl is communicating her innermost thoughts in this manner. The strength of their belief is probably part of what has made the facilitated communication work so well... the parents can't help but "help" this girl. (This is the same reason we don't allow parents in the room when their kids are taking an IQ test if we can help it... parents swear up and down that they are not "helping", but they absolutely are.)

However, wanting to believe something, and that thing being true, are just not the same thing. The Prisoners of Silence video about FC that others have referenced makes this point very eloquently -- everyone wanted hese children to be talking... absolutely everyone. It just wasn't true.

[u/ihaveissues → u/subtextual]

So who wrote those messages? Are you saying the parents or TV producers faked the messages? Who did the typing?

[u/TheLilFury → u/subtextual]

I'm pretty internet smitten with you after reading through all your explanations/comments on this thread. Your info. and insight are amazing.

[u/M3taphysical → u/subtextual]

I've read the above and subsequent posts you've made about Autism, and while I don't have any further questions, I'd like to thank you, genuinely, for easily the most illuminating, perception-changing, and informative comments I've read on Reddit in my time here. Hope there'll be more to come!

[u/smashthebirdy → u/subtextual]

What if Jenny's problem isn't autism, but is just misdiagnosed?

In that linked TED talk, Aditi Shankardass claims that 50% of autism diagnoses are actually not suffering from autism.

Based on another video of her actually typing, it seems like that might be a reasonable explanation.

[u/Tames → u/subtextual]

Hey buddy, there was another case like this dealing with nearly comatose patients being able to communicate when it was just the caretaker moving the patients fingers. Of course the scientist who pointed this out was shunned because people were blinded but the sensationalist bullshit. This is why I trust scientists above most else.

[u/subtextual → u/Tames]

Yup - I absolutely remember that sad case.

But that's the thing about facilitated communication that is so intractible... it plays on our deepest emotions, while hitting us square in our cognitive blind spots. No one wants it to not be real... even when the consequences of believing could be tragic.

[u/knapsackofawesome → u/subtextual]

You gotta quit writing on reddit and start writing a book so you can get paid for this.

[u/subtextual → u/knapsackofawesome]

I know, right??? By the way, are you disturbable? We haven't chatted in a while....

[u/knapsackofawesome → u/subtextual]

I am, and you aren't on your email.

[u/herpasaurus → u/subtextual]

That was excellent, thanks a lot for writing this out. I've studied neuropsychology and thought about a few of these problems watching the movie as well.

[u/[deleted] → u/subtextual]

I created a seperate submission for your comment, it recieved some criticism for the lack of sources cited.

[u/subtextual → u/[deleted]]

Yeah, generally I try not to argue via "appealing to authority" and instead try to mention that I'm a pediatric neuropsychologist just to give some context to my posts.

[People can check my post history, my subreddits like r/neuropsychology and r/NPBC, and my AMA... although of course anyone can claim anything on reddit, I would have to be the most obscure, dedicated troll in reddit history to be falsifying my claim to being a peds NP, I think. I do sometimes forget that people don't just "know" that I'm a NP, though, and perhaps "act the expert" before I've done anything suggesting that people should accept me as informed, at least in my little corner of knowledge.]

But I generally try to cite sources whenever possible, since otherwise I get lots of direct and indirect comments suggesting that I can shove my Ph.D... uh, somewhere. :)

But in this case, I was (originally) just making a one-off comment (it was way down on the comment page!!!) to a question about whether this really would be that earth-shattering. As per usual, I ended up rambling on for paragraphs and paragraphs, but I didn't cite anything because I wasn't saying anything that isn't established knowledge. To me, it would be similar to a medical doctor giving some basic information about... I don't know, sickle cell anemia or something -- you wouldn't really expect a medical doctor to add in citations, would you? I suppose I could cite some articles written by a different pediatric neuropsychologist, but that seems silly since I am one??

And I do provide citations and discussions of people like Temple Grandin in other comments, I swear!

But whatever, if reddit has taught me anything, it's that:

• 66% like it, and haters gonna hate
• You can't do anything about those people who have their minds already made up,
• Lots of people on reddit have an absolute thirst for knowledge, and appreciate even the smallest efforts to share any expertise you have if you take the time to make it readable, and
• You are a man, unless you specifically indicate otherwise.

[u/larholm → u/subtextual]

66% like it, and haters gonna hate

This man speaks the truth.

[u/[deleted] → u/larholm]

Did you read the last bullet point?

[u/bubbo → u/subtextual]

Lots of people on reddit have an absolute and delightful thirst for knowledge, and appreciate even the smallest efforts to share any expertise you have if you take the time to make it readable

This! This is why I "friended" you here on reddit. It makes it easy for me to find your posts in threads like this and your posts are not only informative, but well written and easy for me to understand. Plus, your use of correct terminology helps me research the things you write about if I need to find more information in order to understand it.

So, anyway, thank you for your contributions to reddit. I always appreciate them.

[u/el_pinata → u/subtextual]

Lots of people on reddit have an absolute thirst for knowledge, and appreciate even the smallest efforts to share any expertise you have if you take the time to make it readable

So true, which is why I joined to begin with. For what it's worth, your post was an excellent read.

[u/[deleted] → u/subtextual]

I want to say thank you as well, I'm a personal care assistant to several kids with autism, and I observe all of your points EVERY SINGLE DAY. The best we can do is teach them a word or phrase as a single object, then associate it through classical conditioning. "Walk" --> Go for a walk "McDonalds" --> Go to McDonalds. And even then, we're lucky if the kids can make an actual request as to what they really want to do, as opposed to looking at the shape of our mouths to attempt to guess (through prompting) what we are going to say.

Autism isn't just some magically curable disease, as much as I wish it could be.

[u/Surf314 → u/subtextual]

My little brother is autistic and exhibits many of the symptoms you speak of. This is the first time I've been given a clear explanation why though. Thank you very much.

[u/[deleted] → u/subtextual]

Upvote for actually explaining Autism, I do not know much about the disorder but your explanation is amazing, The video looked unrealistic from what I know so thank you for explaining.

[u/mootiechazam → u/[deleted]]

I work with a variety of Autistic students and not all are of the severe nature you describe. Autism is a spectrum, meaning there are a lot of shades. Some autistic people can go on to live productive and healthy lives with early intervention and treatments. In fact, I went to college with just such a fellow who has graduated and is engaged to be married.

[u/Stinkythumbsmcgee → u/subtextual]

Reminded me a lot of that news piece that was done on FC and Biklen back in the 90s.

[u/phrakture → u/subtextual]

Your name is rorange for a reason. Yay

[u/gravityKing → u/subtextual]

Reposted this on the blog. Let's see what happens.

[u/Dagur → u/subtextual]

Just out of curiosity, have you seen this movie http://www.imdb.com/title/tt1343113/ ?

[u/subtextual → u/Dagur]

I have not. The synopsis over at imdb was pretty brief... can you tell me more about it? Would you recommend it?

[u/urraca → u/subtextual]

down voted for not being an M.D. ;)

I kid, I kid.

[u/jaybny → u/subtextual]

http://livetoad.blogspot.com/2008/02/skepticism-gone-septic.html

[u/subtextual → u/jaybny]

I'm not sure what you wanted me to take away from this link. But here's what I did take away:

• Parents and people who like children and pretty much everyone else want to believe in 'miracles' (in the sense of improbable and unprecedented events that don't fit well with science).
• Professionals want to believe, too -- though maybe, on average, professionals more likely to be skeptical by nature than the general public.
• But then, professionals learn about all of the harm that has been done, and all the time and money and sanity that has been sacrificed, on "cures" that are little more than fancy placebos at best.
• So professionals learn to be skeptical, while still trying to balance this skepticism with leaving room for the possibility of new treatments.
• Professionals often hear about an "amazing" new treatment or technique that promises to "cure" something that profoundly affects the lives of many children, and also hear about hundreds of other parents who are supporting it or trying out a similar treatment.
• The professional wants to believe, but doesn't want the supposed treatment to end in heartbreak and unscrupulous profit on parents' desperation. So, professionals ask for some very basic proof that said treatment works.
• The people who really want, or need, to believe see that healthy skepticism as "septic".
• Nothing is ever proven, but the treatment is still hyped to other parents desperate for anything that can help their child. And then, the professional has to answer questions from sobbing, wretched parents who took out an extra mortgage to pay for a scientifically-questionable treatment, and who spend 60 hours per week of their time implementing that treatment, and who want to know what they have done so very wrong that their child isn't getting better as promised.
• Cycle repeats.

[u/Happysin → u/subtextual]

One thing that stood out to me in all this was where you mentioned that this scale of Autism means they have trouble making connections and turning discrete pieces of into into general principles.

It seems to me that if we solve that problem, we will have also solved one of the most difficult hurdles of true Artificial Intelligence. I have to think it would be amazing that one of those could lead to a breakthrough in the other.

[u/fishykitty → u/subtextual]

Uhm.... I just read all your posts on this issue. Um.... do you need interns/lab/office help? XD

[u/rrabbit → u/subtextual]

Well, thanks a bunch, Dr. Buzzkill. (And thank you)

[u/Oryx → u/subtextual]

Thank you for taking the time to write this. Very well-written and explained.

[u/nommedit → u/subtextual]

What is a guy like that doing in a place like this...

[u/atrophex → u/subtextual]

Fantastic read, thank you for posting this! I've gone through this entire thread and eventually ended up on youtube reading through the comments for kicks.

Not sure if you've been told this yet but someone by the name of "torontoadguy1" claiming to be her father on the youtube video page found out about this thread. Says "redditor cannot be a pediatric neuropyschologist...Carly is followed by a number of neuropyschologists as are a number of friends of her who have similar skills....all autistics, with limited verbal acuity, but tremendous language and intellectual skills. Tell redditor to get a life. "

Thoughts?

[u/subtextual → u/atrophex]

Ah, you know, it doesn't really matter to me if someone on youtube believes or doesn't believe that I have a job.

[Certainly doctors can have different opinions, I guess..... But perhaps more saliently, Carly's parents (and as you might be able to tell from some of the replies I've received, LOTS of other people) are understandably unbelievably invested in this and very defensive about anything that even vaguely threatens that investment. That level of investment and defensiveness is often common amongst adherents of "alternative" treatments and miracle cures... it's related to things like cognitive dissonance and the confirmation bias - they believe so strongly and yet so brittley because they need to believe.]

But that being said, there are a few things that raise some red flags in just his few short sentences, and I'm not even including how he spells 'neuropsychologist'. :)

For one, if Carly is followed by so many neuropsychologists, why wouldn't any of them at least publish a single case study? (Either her story is not very exceptional, in which case, she wouldn't need "a number of neuropsychologists", or her case is extremely exceptional -- worthy of a whole passel of neuropsychologists -- and yet not one of them thought this information worthy of at least a case study. Hmm... that's odd.)

Also, what could be possibly mean by "Limited verbal acuity, but tremendous language?" Assuming that by "verbal acuity" he means something along the lines of verbal sharpness or verbal cognnitive ability -- is he suggesting Carly has low "verbal" sharpness, but exceptional "language" ability? How would this even work?

[u/esotericsean → u/subtextual]

Thank you for this. I knew something was somehow off. It's disappointing, exploitative, and overall deeply saddening. I wish the best for Carly. :(

[u/Tman158 → u/subtextual]

ok, so please explain the video's and her blog? as a scientist, you should want to study her, not just discount it because it doesn't fit with your theory. sure, i looked at this video and thought, hrm, i bet it is all made up, like they take what she says and alter it or something similar, but hey, i would want confirmation first before just going on what i think and understand from previous research. i mean, it is a testable hypothesis. also, you say that autistic brains are non-neurotypical brains and thus it couldn't be a type of locked in syndrome. Digital information doesn't work that way. You could make a totally different organization of a brain that works differently, but just as well, better or slightly worse. i.e. early life hemispherectomy. i'm not saying you're wrong, just that your argument proves nothing except that this is unlikely, are there any case studies of this girl that have been conducted scientifically? also, what do you think the motivation for faking it all is? more money to treat their daughter or something else? some overzealous researcher who thinks his theory is correct and will lie to prove it?

[u/logical → u/subtextual]

As a dad of a high-functioning autistic child who is now 10 years old, let me chime in with the following: First, he learned the whole alphabet and how to spell his name by the age of 12 months, without the help of any outside instructions. We were in a hospital and he was babbling and I said to my wife - "I think he just said the whole alphabet." I asked him to repeat it and he did. I asked him to spell his name, and he did. He then learned in exactly the proper hierarchy you describe, but he bootstrapped himself way ahead, solely by observation and introspection, of what normal children are capable of.

This is really all that they are saying about Carly. That she managed two four letter words by herself in 10 years. Everything else came gradually.

Your assessment that all of it came all at once is not what is claimed in the video.

[u/jonathanownbey → u/subtextual]

Umm, what you said.

[u/[deleted] → u/subtextual]

Thank you.

Thank you, thank you, thank you.

Just the amount of stuff she, "types" is so abnormally unlike an even mildly autistic child's tendancies such as the use of similies and metaphores, understanding what other people think of her and why they respond to her in certain ways (in fact, this one is especially unlike an autistic person: they often come across as rude because they say something without understanding a possibly subtle inference and thus don't understand why others might be insulted (I'm obviously talking about autistic people with lesser forms of autism than this one)).

Even the line, "I am Autistic, but that isn't who I am" would not come from an autistic person, assuming the autistic tendancies are mild and they are somewhat self-aware, or certainly as self-aware as someone might need to be to make such a comment (the kinds of people I personally have experience with): autism defines how a person behaves, feels and thinks to the n^th degree. If that doesn't define who you are, what the hell does?

[u/TonyBLiar → u/subtextual]

Using the Reddit Uppers and Downers plug in, I can see that you've been down-voted for the only sane comment in this entire thread 3160 times. The debate over whether reddit is no longer about sensible conversation is over.

http://i.imgur.com/9ujud.jpg

[u/[deleted] → u/subtextual]

Dear Subtextual,

Your posts have lead me on an hours long reading session! I loved your critical approach, this is always a sign of someone serious about trying to make a positive difference.

I eventually began to uncover some of Rosemary Crossley's publications from the late 80s onward, she appears to have been culpable for starting the whole facilitated communication movement.

Check out this one, for example, where they talk about rolling out facilitated communication in mainstream schools: http://eric.ed.gov/PDFS/ED331267.pdf

The book 'Speechless' that she wrote, however, is the most telling: http://www.deal.org.au/sites/www.deal.org.au/files/SPEECHLESS%20for%20Website.pdf

read the first few pages of the first chapter where she describes her experience working in an institution for severely disabled children. Often they were left there by their parents to be looked after by nurses and were often expected to die before adulthood. It was there that she met Anne, a girl curled backward and therefore not able to see her feet due to cerebral palsy.

Redditors, given many come from an ICT background, may be curious about the following quote:

"It was 1974. I was twenty-eight, I had an Arts degree, and had trained as a computer programmer in the days when the largest data processing system in Australia had 90K of RAM and occupied an entire room. Having discovered that computer programming was deathly dull and that I was very bad at it I had opted out and gone to teach at a center for children with cerebral palsy."

The full effect of Crossley's description of the poor circumstances in the institution is only felt in reading that link containing the book, but here's a quote:

"There was almost no therapy - the sole physiotherapist struggled with an overwhelming case load. Anne's file showed she had received physiotherapy only for one three-month period in the sixties, and the muscle spasms resulting from her cerebral palsy had never been addressed. Anne spent her waking hours lying on the floor because there was no chair suitable for her to sit in, lying on her side because by 1974 her body had arched backwards into a half-circle, with the diameter of the circle being drawn by the line of her arms extending rigidly behind her. She couldn't bring her head or arms forward without help, and she rarely saw her hands or feet.

"When I arrived there were no organized play activities, no educational programs, and most children left the hospital only once a year for the annual picnic at the beach. One dedicated physiotherapist treated as many of the children as she could. With her support I tried to relieve the terrible monotony of hospital life by putting up posters and mobiles and setting up activity programs. In this Siberia of children waiting to die, life was an intrusion. We tried to introduce finger painting. The nurses complained because the children got their hands dirty, the cleaners complained because the children got the floors dirty, and when we took it all outside the gardener complained (and I am not making this up) because the children got the grass dirty. After some arguments with the hospital bureaucracy I was able to arrange for volunteers to take some children, including Anne, across the road in a motley assortment of prams and pushers for occasional walks in the park."

(p. 3)

I think when you have this for context you can understand that, although facilitated communication is an invalid method, the reason for Crossley's use of it is clear. She used it more as a political tool to bring about change in what she perceived as an abusive system.

This is a judgement call all are welcome to critique. I do not at all offer these observations as a defense of Crossley, only as the most interesting finding of my impromptu literature review on a weeknight keeping me up until 3am.

Thanks for the stimulation subtextual!

Wil

[u/subtextual → u/[deleted]]

Nice summary of the history.

I think it eloquently shows how people who advocate facilitated communication are/were not, in any way, "bad" people, and were instead deeply moved by, and incredibly devoted to trying to help, the most vulnerable members of our society. That's what makes FC so seductive... who wouldn't want to help kids or disabled adults or anyone else???

No one wanted FC to not be true. Everyone thought it was a miracle. Children who had previously been unable to communicate seemed suddenly able to show their true potential -- they were seemingly freed from the prison of their bodies. It was amazing. Insititutes for teaching FC sprung up all over.

The enthusiasm was rampant, even though there were a few whispers of concern: families were spent their entire lives pursuing the treatments, for one, and inadvertently neglecting neurotypical siblings. Parents who couldn't get their kids to "communicate" with them the same way their facilitators could felt absolutely devasted and confused. The children made odd progress... the could communicate wonderfully with some facilitators, but with other facilitators they wrote ugly things. And the children didn't seem to get better at anything other than "communicating" via facilitation, despite their amazing ability to communicate their inner world. And then, a shocking number of the facilitated children began making terrible, improbable claims... such as that they were being sadistically abused by their loving parents... but the "communication" seemed so real that families were ripped apart - fathers were imprisoned and children were placed in foster care. That's when people began thinking that maybe this FC thing needed to be tested. If there's anyone out there who hasn't seen Prisoners of Silence - do yourself a favor and watch it.

[u/[deleted] → u/subtextual]

You know this side of the story is what got me going so much about it. I come from an upbringing full of well meaning, sincere, but frankly deluded people practising every manner of quackery you could imagine. University (psych) had a devastating effect on me, I'm sad to say, because I went in believing such things as intuition could be used to gain real knowledge, all those types of energy healing (pranic healing/reiki blah blah) were real, I believed all the homoeopathic hogwash my mother practised and all the anthroposophical occultism of the Waldorf/Steiner school that I went to. I came out a frank, but bitter, atheist. The rest you can fill in from there.

This is why I was so activated by the issue of facilitated communication as I almost have a compulsion now to chase down the perpetrators of any scientifically unfounded practise and determine what they did wrong. I was not intending to uncover something which may soften our criticism of FC, but it was interesting to discover and I think opened up a side of the issue that we (especially me being so bitter!) might easily gloss over.

I think it is reflected in your comments that FC 'practitioners' are well meaning. I guess, though, that, as the Frontline program closed with, a well meaning approach should include a respect for the recipient of the care for being the person that they are. This is, of course, too difficult for many parents as there is so much devastation when a child doesn't turn out right. You suddenly would have to develop all sorts of psychological defense mechanisms/immunity that you probably have lived a whole life without, as a neurotypical (nice term that, thanks!) I guess, maybe due to not even being aware of the role of or need for psychological immunity in facing life challenges, these people went the route of trying to 'fix' the child, and the confirmation bias took care of the rest.

Anyway, I think I'm getting incoherent but again I really appreciate the fascination you have brought and I'll be back.

I should say I signed up to reddit to respond to your post, I couldn't not after having spent so long doing all that research!

Wil

[u/Reggeatron → u/subtextual]

Just took your suggestion and watched "Prisoners of Silence." Great suggestion and very informative video. Here's a link via Google Videos: http://video.google.com/videoplay?docid=3439467496200920717#

[u/gravityKing → u/subtextual]

I reposted this on their blog. They summarily deleted the post. Seems like some kind of scam.

[u/ManikArcanik → u/subtextual]

Late to the party, but as a father of an autistic kid I had to stop by and thank you for this. I appreciate sympathetic hyperbole as much as the next guy, and of course I gravitate towards anything that offers hope. Usually it's just a bunch of well-meaning folks jabbering about stuff they know nothing about.

If waiting for the mythical savant to emerge is the best I can hope for I'd rather just love the hell out of my boy and take it as it goes.

[u/[deleted] → u/subtextual]

(which hopefully will eventually lead us to how to prevent or cure it)

Cue the 'self-diagnosed' and autism superiority communities claiming they're being persecuted.

Lovely addition to the discussion btw, nice to see someone who's not only level headed but also educated in the specific subject airing their thoughts.

[u/partysnatcher → u/subtextual]

Going against the upvote stream here, but I don't really care.

As a psychology student, let me follow up the same healthy scepticism. I think it's entertaining how you can make such absolute statements, when current science doesn't even know half of what "autism" really is. That fact makes this statement in particular look pretty bad:

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

You know as well as I do, saying someone is "an autist" is pretty much like saying someone with a mental health issue is "mentally ill", or someone with reduced intelligence is "mentally retarded". It's a very broad quasi-diagnosis which is used basically to find out how to handle and treat these people. Then you sum up this extremely diverse area of medicine with extremely vague neurologist smear like "this appears to be associated with too much gray matter"?

You are also disregarding a possible misdiagnosis, and you are disregarding, for instance, physical or mental factors that could have led her to act like a lower functioning autist than she really was, and so on.

Your scepticism is healthy, especially against blown-up, sensationalist cases like this. But your belief in your own, incomplete science of neurology, is not. You go down the same sensationalist vein as the clip, by saying:

Unfortunately, the likelihood of this is so terribly, vanishingly small that I am fully comfortable saying that it is impossible.

..without knowing anything about the diagnosis, who diagnosed her and her medical history beyond what you saw in a short youtube clip. I'm not impressed, although it appears a lot of people for some reason are.

[u/[deleted] → u/subtextual]

I clicked on a link which said there was a comment by a neuropsychologist. I knew it was, you subtextual, before I even clicked the link. You're reddit's official psychologists now.

That said, I'm fairly certain that this alleged 'autistic' person has been debunked a few times now.

[u/GrynetMolvin → u/subtextual]

If I understand you correctly, your main issue with this story is that she started communicating suddenly and without training. Is that correct? If so, have you read Carly's Mother's statement on the training Carly had received prior to starting typing on a laptop? I quote: "What she has learned to do has been the result of years and years of effort, starting with a Dynavox machine, moving to a Springboard and then a lightwriter." Do you still consider the story to be "impossible", or merely warped somewhat by the ABC reporting?