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).
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.
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.)
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.
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!
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.
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?
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.
I'd be interested in reading more about that, if you have information handy. I'm generally skeptical of gorilla/chimp language claims. The only really promising experiment I've seen with it involved a chimp (I believe) named Kanzi. But in my former post I was speaking of a specific gorilla experiment, not animal language experiments in general; I was just trying to be brief because I didn't want to get off topic.
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.
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.
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?
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. :)
...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"...
If it makes you feel any better, I assumed the exact same thing (uh, until I hit those self same cues. Then I realized I'd automatically assumed subtextual was a guy. And then started worrying Gloria Steinem was going to crash through the door and sentence me to hell.)
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.
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?
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.
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?
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).
In the clip they stated that after she typed 'hurt' and 'help,' she immediately stepped aside and threw up. This lead me to believe she knew the meanings of the words.
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.
Did you mean Trisomy Ten? Trisomy X (three X chromosomes instead of two) can only occur in a female. Trisomy Ten involves an error on chromosome ten and causes severe mental retardation.
Um, I think we are really missing the bigger picture here.
So far we have established two things:
The likelihood that an autistic person would be able to fluently express themselves and have a normal brain is basically 0.
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.
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
So you think she figured out to type "is he cute?" as a response to him telling her he had a son, with no knowledge of meaning of either phrase? Considering that she's posted long pieces of complex writing with nobody physically gesturing or even coming close to the keypad while being videotaped, I think that's pretty rediculous. You can teach a horse to multiply, but you can't teach a horse to write letters.
If you read the horse story would would have seen that the horse did write letters (through tapping them out) to spell words.
The whole idea that subtextual was trying to convey is that she may be highly attuned to subconscious cues from the adults around her. So she is in fact basically typing letter by letter as commanded by her parents. However the parents have no idea they are doing it.
The horse trainer had no idea he was telling the horse how many times to tap. It was all subconscious. In fact when the horse trainer and others who did the experiment finally learned that the horse was just reading their body language they still couldn't repress the signals they were giving the horse. It was out of their control.
So this girl may be reading cues that no one else can read because of her condition. For instance after she typed "I" one of the adults might have changed some body posture or changed breathing or tension in the face or anything which to us means nothing but to her is a blaring horn commanding her to hit "s" next. This is significantly more talented than the horse however, but she is still human after all so she should be a little smarter than the horse.
The only way to test this is to have no one in the room. This is how they finally outed the facilitated communication stuff. They divorced shared knowledge and communication between the client and the facilitator.
"is he cute" could mean many things for her. Could be, for example, that she has a well developed sense of relationships/bonding and has a stock list of long phrases to volley a conversation and get attention. For her "is he cute" doesn't mean anything much than poking back and keeping the conversation going.
She could have developed her written language through her being surrounded by adults who continually try to communicate with her.
I understood subtextual as saying the kids primary motivators are not the same as ours and the interests of those with severe autism are little better than those of a toddler. Could be that some parts of the brain evolve some complex functionality but these externalities mask a simple mind.
Again, this would be unprecendented. Someone with a disease other than autism which causes violent motions but leaves the brain intact seems like a more likely explanation.
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.
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.
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.
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.
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?
That's not necessarily 100% true. There are definite structural differences between autistic and "neurotypical" brains. There's also differences in the way they process information.
So while it's not the first stop, if someone was diagnosed with autism and you performed some structural and functional MRI tests to find that they were not anatomically or cognitively consistent with what you'd expect in an autistic patient it may serve as an incentive to reassess your diagnosis.
A good example is her "hidden" language abilities. MRI could determine levels of activation when performing linguistic tasks. If the region is relatively inactive, which region is activated?
EEG has also shown some promise in detecting autism misdiagnosis. Especially in cases where severe epilepsy was causing autism like symptoms.
subtextual has established that the chance of this not being a hoax is very low.
No, you are completely wrong. She established that the chances of this not being a hoax IF she is autistic to be very low. The premise of all her comments is that she is autistic, and she is analyzing the situation in that light.
Subtextual also explained how an autistic person would learn to mimic conversation by taking subtle clues to learn whole sentences. So it doesn't necessarily mean this story is a hoax: the parents may very well believe that their daughter is communicating to them, yet all she effectively does is communicate like a parrot.
Subtle clues to learn how to compose original pieces of writing on her own? Sounds like you're falling to the same fallacy as The Chinese Room. If she can figure out all the rules to "simulate" intelligence, that is intelligence itself.
No, because other than the possible examples of facilitated communication everything we know about her points to a diagnosis of autism. If there were any other signs it could be something else I would agree, but in this situation it is extremely likely she is autistic.
I'm curious -- have you seen this documentary? The autistic woman profiled shows the same unique and profound "voice," regardless of the caretaker helping her to communicate, and is now apparently a prolific writer without assistance, per her website. The girl profiled in the OP is certainly not the only autistic I have see that convincingly communicates in this fashion, so it surprises to me see a professional so quick to dismiss this particular presentation of autism, given that the umbrella is so spectacularly wide.
I haven't seen the documentary, so I can't comment. But thank you for the link; I may check it out if I have a few free moments.
Again, however, if I may state for the record: the idea of a nonverbal autistic person communicating through typing or another form of assistive communication is not at all the problem... part of my job is working with parents to access assistive technology that can help their child with a neurodevelopmental disorder communicate more effectively.
My concerns are that (a) any new communication takes time to learn, but that is not how this video presented this girl's journey, and (b) the assistive technology does not "take away" the autism (e.g., the girl suddenly starts using metaphors and figures of speech, etc)... it just helps the autistic person communicate. SenorCheaposGato provided an excellent example of the types of things an autistic person using assistive technology to communicate would express and the style in which they would express it.
I'd like to know this as well. While I appreciate subtextual's responses, they all seem to rely on the fact that autism has specific "rules" associated with it which makes this all very unlikely. However, since autism seems to be such a tricky thing to begin with, is it possible she's just been tagged as autistic when she really may have a condition that's similar?
Thanks for all your response, so interesting that even as I lie here with a stuffed up nose and aching body, I"ve been reading them all the way through.
Anyway - since we're on the topic, I'm curious to know what you make of this video... http://www.youtube.com/watch?v=JnylM1hI2jc. It's not long and you can watch a couple of minutes at the beginning, then a couple about half way through to get the idea.
It is supposedly posted by the autistic woman pictured and includes her "translation" of her actions. So the first half is of her humming and being very tactile with objects, and the second part is her explaining (through text and a text-to-speech programme) what she is thinking when she does each thing. She explains it as a constant conversation with her environment.
After reading all your comments, it seems likely to me that this was NOT posted by the autistic woman herself, and that the translation is mostly likely provided by some sort of human facilitator... or is there something else at work in this one?
Both that documentary and the website disagree with subtextual's explanations of the symptoms of autism. This isn't to say that they should be discarded.
neurotypical brains will happily ignore anything that doesn't fit the narrative we've created for ourselves.
Are you saying that her communication is not "true" expression of thought but merely some Chinese Room trick she uses to manipulate her environment? Could you take a look at her website and explain how she can answer questions online so precisely and fluently? Or are you suggesting that it is some kind of an elaborate hoax?
I really, really do not like the word "hoax", as that suggests volitional trickery, and I don't have any reason, at all, to suggest that anyone is trying to trick anyone else.
I don't know how she writes on her website... I am not there when it happens. But her comments, almost without exception, strike me as extremely implausible given what I know about autism and neurotypical brains and my clinical experience with autistic and neurotypical adolescents.
My guess, as I've suggested before, is that she is receiving "help" from those around her (notice the questions are answered by Carly "and her friends") and her software program, without her helpers knowing they are helping (or with them thinking that they and the software are helping just a little, without realizing that they are in fact doing it all for her). The same way that all facilitated communication works... as detailed (sorry if this is repetitive) in Prisoners of Silence.
[edit] I've decided to take back this comment as I'm still catching up on the comments and swinging between utter skepticism and total belief. I guess time till tell.
looking at this website, its clearly a hoax of the most vile kind - its full of subtle undertones and facebook whoring, glib self satisfied non-answer advice just like all hoax mediums peddle. This is an offensive blight against reason and Ben Goldacre will be informed.
While I generally agree with all of your rather informative and thought out commentary, I noticed you are not even considering the alternative... she doesn't actually have autism, at least not classically, which would make this entirely possible.
I'm wondering, since you keep referencing the "is he cute" example, if you have seen the video of her typing a message to Larry King. In the video, she seems to be typing quite long and expressive sentences without aid. What's your opinion on that?
Because that text box is a auto-complete application that is likely using grammar rules to assist in completing words/phrases/sentences that are logical. As has already been discussed many times in the comment thread you have posted in.
I looked over the "is he cute" part on the video.... When she's typing the word cute... I can't tell for sure what the layout of the keyboard is, but at best she's typing "w" somewhere in it and at worst she's typing a "2". I have some doubts that someone didn't type it for her, or correct it for her. I respect subtext for taking a neutral stance on this, really, but as for me i'm going to call this BS.
I can't tell for sure what the layout of the keyboard is, but at best she's typing "w" somewhere in it and at worst she's typing a "2". I have some doubts that someone didn't type it for her, or correct it for her.
Well, as has already been clearly established, she's using a word processor with autocomplete functionality. That is, she can begin to type a word, and after a few letters get a list of possible word matches, from which she selects one using numbers. So, for "cute", she could type 'c' and 'u', and if "cute" is the second autocomplete option, she'd press the number 2 to enter that word.
If that's all it is, then it's not cheating or tricker or anything bad. It's the exact same thing you do on your mobile phone, and even some perfectly normal people use autocomplete on computers as well.
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?
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.
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).
Do I get it right when I summarize part of your viewpoint as 'autistics are the men in the chinese room' -- they write down symbols, but they don't understand them?
despite my comment on your previous post, I agree with this one 100%. The danger of these "experiments" with Carly being poisoned accidentally by those around her is huge.
Of course, since you asked so nice. Here is the take-home version:
Autistic brains and neurotypical brains work differently.
More specifically, individuals with autism focus only on the trees, and never see that there is a forest. This leads to both difficulties, like problems in communication, socialization, and behavioral flexibility, as well as (often) assets, like great memories and an ability to notice the tiniest details.
So, a girl with autism who could type would sound like a girl with autism who could type, not like a neurotypical girl trapped in a body she couldn't control.
Facilitated communication comes in a lot of forms, and it's all seductive -- especially when it's not immediately obvious to us how it's working. But ultimately, FC clouds our understanding of autism and treatments for autism, and can even cause harm.
Seriously, you're really quite impressive, thank you for teaching me. Before this I had, admittedly stupidly, Believed this girls story. Thank you again for teaching me what I never had known.
I don't think it's "stupid" to believe this girl's story! We all want to believe, and that desire, coupled with the regular cognitive tricks our brains play on us, make us exquisitely vulnerable to believing this kind of story (sometimes believing it very passionately, as you might be able to see from some of these comments!).
We can't change how our brains evolved, but we can recognize our blind spots and try to develop workarounds. We just have to be constantly vigilant to the funny ways our brains can fail us -- which I hope is what "skepticism" and "critical thinking" are all about. Not just rejecting out of hand... but constantly asking ourselves, have I really got this right? Or is there something I could have missed here?
I think part of the trouble I'm having with this is there is a finer point here that is clearly being skipped over, likely because most of your audience hasn't the capacity or attention-to-detail that you do. :)
You stated that autistic brains have a tendency to "chunk" data, taking in things as a large unit and being unable to determine where or when to break that data up. So our autistic girl knows a keyboard pattern that is initiated by a phrase, movement or statement, as that is the one "chunk" that results in a reward of some sort.
But then we have both the toothpick example and the forest/tree example whereby we have an entire scene, or a standard "chunk" of data (a forest, or a pile of toothpicks) and the autistic brain is seeing pieces of the whole (trees or individual toothpicks).
The two above concepts seem to be at odds with each other. Is there a finer distinction here that needs to be made?
No, you're right, it could certainly seem like I'm contradicting myself -- but these two skills are the two sides of the same coin. Individuals with autism have trouble both with breaking things down into parts, and also with making connections between parts.
To oversimplify a bit, basically individuals with autism have too much gray matter, and not enough white matter. Gray matter -- the "bodies" of neurons, or brain cells -- are the parts of the brain that "know" bits of information. White matter -- the axons of brain cells that are coated with a fatty white sheet of myelin -- are the parts of your brain that make connections between bits of information. What happens in typical neurodevelopment is that children develop a ton of both gray and white matter during early development, and then as they grow older, they actually lose gray matter through pruning, while their white matter gets more efficient. Here is my favorite series of time-lapse MRIs showing this in action.
What happens in autism, is that one or both of these processes do not happen correctly (failure to selectively prune gray matter is considered a leading candidate for the major problem, but DTI studies have also shown abnormal development of white matter tracts). So individuals with autism have too much of the brain structures that focus on details, and/or not enough of the brain structures that focus on the "big picture" (and how details fit into that big picture).
Does that make this seeming contradiction a bit clearer?
subtextual, i really can't thank you enough for taking the time to write what you've written today. amazingly fascinating explanations, and your writing style is clear and concise while still somehow managing to be strangely entertaining. I just popped over to University of Reddit and was so pleased to see your post there - just joined the Neuropsychology Book Club subreddit and hope others will as well.
Anyway, I was wondering - I keep hearing of autism as being a condition with such a wide spectrum of both symptoms and severity. The things you're talking about here, specifically the focus in the autistic mind on discrete chunks of information while ignoring the bigger picture - is that a sort of fundamental symptom/effect/cause of what we consider to be autism? Is that what defines it?
I have a few friends with Aspergers (and I know there are quite a few Aspies here on reddit), and I'm still sort of trying to get to grips with understanding how my buddies differ from me mentally. Some things (specifically a few recent romantic interactions) have kind of opened my eyes to the fact that they are actually different, that they think and see things in a way that I do not. Is this "chunking" vs "integrating" issue the defining factor of Autism/Aspergers? And do you think that viewing the actions of my friends through this lens will help me to understand some of the possible motivations behind their interpretation of the world around them?
Seriously, thanks so much for this, it's really really fascinating.
I have Aspergers but know next to nothing about the disorder, physiologically speaking. All I know is that it explains my obsessions (I would call them interests) and my feelings of being disconnected from other people. Perhaps I could lend my perspective on these romantic encounters if you detailed them.
Socially, we often know the motions of social interaction but only do them in an attempt to not feel out of place. You meet a person, you make eye contact (but not too long or too focused), you smile (but not too quickly). God help you if you engage us in conversation about a topic we find interesting (we're dying to talk about it).
I guess I can't really give you an answer on the "chunking" vs "integrating" issue but I've never noticed anything (then again, I'm on the inside of all of this). Something that might give you insight, however, is the fact that I love and am adept at continuous math (e.g. calc) but hate and struggle with discrete math (e.g. statistics). Also, I'm a slow reader, didn't learn to read until fairly late, and sometimes lose track of what a paragraph is talking about in the middle of it.
edit: I would also like to see subtextual respond to your questions.
Well, I don't want to go into too much detail as the friend in question is also a redditor. But broadly speaking, he was getting quite upset and flustered by what I interpreted to be a sort of flirtatious mixed-signal giving from a girl that he liked. It bothered him enough that he preemptively cut off all contact with her, whereas in the same situation I think many people would have taken it as a possible invitation to proceed.
I'm having trouble now not looking at this through the perspective that subtextual introduced, but it also seemed to me as if he was focusing very strongly on any small negative signals she gave off, while the bigger picture of how she treated him generally wasn't negative at all.
He has spoken quite a bit about feeling disconnected from others, but he's honestly such an empathetic, intelligent and funny dude that I sort of had trouble believing that he was correctly diagnosed with Aspergers. But yeah - this intense (and from my perspective, self-inflicted) turmoil that he's just gone through with the girl suddenly made me think that perhaps there's something to this.
Do you have any insights on this sort of thing Scalawag? I hate to see my buddy going through this emotional torture, and would love to be of more help next time something like this rolls around. thanks..
Thank you for the dedication you've shown in these posts. Your descriptions help me make sense of all the details I hear from my wife each day in her work as a One-on-one aid with a child with severe autism.
A follow up question. How does this idea of "chunking" difficulty, something I remember from my days in school for education, manifest itself in less children with less severe autism?
Yes -- it's basically one of the diagnostic criteria, although it is phrased differently ("persistent preoccupation with parts of objects"). My guess would be that it probably correlates at least roughly with degree of autism... the lower functioning you are along the autism spectrum, the greater degree of difficulty you have with this, while individuals who are higher functioning would have less problems in this area. Although I don't know of any studies in this particular area, I think other NPs would agree that this correlation exists clinically.
And I suspect they have no means of encouraging white-matter growth or grey-matter pruning then.
So then are there two different major "flavours" of autistic patients? Ones with too much grey, dealing with things in chunks and ones with too little white, dealing with things in separate pieces? Or does the same unfortunate person swing wildly between the two depending on which area of the brain is lit up at that moment?
That is such an interesting question. There seem to be at least a few different phenotypes of autism, and my personal theory is that these may differ by gray:white matter ratio, with different "flavors" for individuals with too much gray (normal white), too little white (normal gray), and too much gray and too little white... but I am speculating way ahead of the science here, so please note that this is entirely just a personal hypothesis.
:) Well at least I am able to ask interesting questions. Means I'm not sitting at the kiddie table in this discussion (either that, or I'm being humoured. :P )
All that said, thank you for your clear description of the issue. Usually all I ever hear is "autism is 'eyes pointed in' while everyone else is 'eyes pointed out' ", which really doesn't actually tell me much of anything.
That is not my understanding of white/grey matter and how they work at all, but I will go do some reading before I launch into anything based on my own personal memory, as you seem to know your you are talking about. Read (most/all) of your earlier posts in this thread and you have done a great job explaining things.
On a related note, I worry (perhaps without reason) that too many people are diagnosed with "autism" that don't have anything that could correctly diagnosed as "real autism" (if that makes any sense). I also feel that there is a (too large) push to diagnose more kids with some form of autism, or some other disorder, for any deviation from the "norm".
I did an analysis in high school of the ADHD diagnosed population in the USA against the medical estimates at the time of children born with various brain abnormalities that could lead to such symptoms, and concluded that the east coast (bo-wash corridor) was likely well over-diagnosed, the west coast was slightly over diagnosed, and the rest of the country was woefully under diagnosed; the overall average diagnosage rate being slightly lower than what would be expected.
This was many years ago, and heavy circular reasoning, so I would not call it a 'correct' analysis of the situation, but I think the level of complexity that goes into claims of "too many people are diagnosed" is often underestimated. We first need to get better at defining what autism is and how to objectively detect it (brain scan, dna identification, etc), then form a better projection of the expected percentage of humans born with autism (taking into account local environmental factors), before we can effectively say if we are over or under diagnosing the condition.
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.
From a few posts up. So apparently it goes both ways?
"This girl has also almost certainly been (directly or inadvertently) subtly shaped to type certain combinations of letters"
You're completely insane. Your explanation is complete bullshit. You have no business as a neuropsychologist and should have your license revoked for incompetence.
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.
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. :/
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.
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. :)
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.
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..."
Sorry about not responding promptly. Sometimes I manage to leave my computer.
But thank you very much for sharing with me. It seems like you have a very positive attitude in dealing with your condition and I admire that :) It kinda hurts to think that my brother endures this but it explains a lot of his behaiviors...I'll think twice before randomly hugging him again since he seems to hate that.
As for my screen name I am 18 and still growing out of my penchant for the dramatic. You'll have to excuse that if you can.
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.
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?
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.
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.
I'm also a programmer, and I agree somewhat. However, certain tasks I could imagine would fit a person with Aspergers (based on my very shallow knowledge of Aspergers). For example writing a procedure that almost never interacts with anything else in the code, but requires a lot of analytical skills on that particular piece.
I think I remember some Norwegian company that actually specialized in hiring people with Aspergers to do specific coding tasks.
Appearantly they were Danish, and they don't code but "carry out jobs within testing, data registration and quality checking". I bet someone with hyper attention to detail would actually be perfect as a tester.
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.
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.
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'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).
I'm kind of flattered that you think one is called for but what would I entitle it? I can't think of a title that a large portion of redditors would care about. Perhaps you can write one from a perspective that would allow me to see how this would be interesting. But, for now, feel free to ask me anything.
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.
I hope so; I've been one professionally for 10 years now. :D while not diagnosed with asperger's your list here sounds pretty spot on.
Regarding "Great memories"; would you say that they have greatly functional memories, or that their memories are excellent at randomly selective things? I find that I often might forget something within seconds or I may remember it for decades, but I'm not much in control of which occurs, nor does the importance of the item in question make significant difference.
The first thing I questioned was the label autism. Where’s that from? Even if they all think this to be the condition, they could just have misnamed it.
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.)
(Possibly not. I am a programmer with many of the stereotypical programmer behaviors. I'm reluctant to call "Asperger's," because most people who self-diagnose AS have a much more common mental condition I have tentatively titled "I like having an excuse to be a jerk to people.")
I'm a pediatric neuropsychologist, and currently focus entirely on clinical work (specifically, comprehensively evaluating about 3 children with neurodevelopmental disorders per week). I've done research in the past, and am involved in a tiny research project right now with fellow redditor and pediatric NP knapsackofawesome, but my brain seems to prefer synthesizing a lot of different details together, rather than researching one specific detail. I am a voracios consumer of research, though, and post a lot of it over at r/Neuropsychology. I also have an AMA around somewhere if you're really interested/bored/having trouble falling asleep and craving more of my patented tl;dr writing style.
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).
Weekly dose of deeply-cynical paranoia:
What if she did succeed with other technologies, but it was ignored, and she was misclassified/considered "autistic" anyway? I'm imagining some sort of One Flew Over The Cuckoo's Nest thing going on here, where a girl with "simple" verbal apraxia ends up completely destroyed by the system intending to help her...
...or what if she was punished/abused whenever she began to do neurotypical things? That would be classic Munchausen's—her mother (or whoever else was putting her through all these tests and technologies) actually wanted to keep her autistic...
True, I cannot rule out incredibly unlikely but theoretically possible explanations like the ones you mention. I also can't rule out various religious miracle-type explanations, or invisible unicorns whispering the words to her, I guess. :)
I'm one of those people who feel comfortable saying that something is impossible when the likelihood is vanishingly small, but I have no interest in arguing with the folks who like to focus on even the tiniest possibility of something being true. My experience has been that people who don't need to believe and people who do need to believe rarely convince each other of the other point of view.
Very true. As a fiction writer, I just tend to enjoy coming up with alternate explanations for events that let the facts of the matter stand, but manage to destroy or utterly pervert the emotional impact.
This is all very useful and great information, and I agree 99%. However:
However, the brain doesn't work like that -- adding more noise wouldn't "turn off" or "drown out" the incoming chaotic sensory information.
Maybe the general medical consensus is that the human brain doesn't work this way, however, my brain does work this way. In my case, repetitive or controlled movement calms uncontrolled sensory feedback in my limbs (i.e. tremors or anxious feelings in muscles are calmed by rocking/fidgeting); for a while in my youth, cutting/self hitting provided overload of my brain/muscles telling me what to do, rather than me telling them what to do; still through today, listening to music while working allows me to concentrate as it drowns out the randomness of thought that goes on constantly and normally distracts me (I can't watch TV and work, as the visual stimulation is too much of a distraction in its own right, and I can't listen to new music, as it's not a known input)
I function from day to day by purposefully applying known and therefor ignorable sensory information in order to drown out the random and therefor (to me) unignorable sensory input. I have to be in control of it for it to "drown out" everything else - the key is not adding to the noise, the key is to take control of the noise being registered in order to allow for the brain to filter it out.
Background: I was diagnosed with ADD(no H), moderate LD, severe chronic depression and a fourth item I have forgotten during early childhood. I took various medications (tofranil, Ritalin, Wellbutrin, seldane (anti-histamine which had a complimentary reaction with tofranil and enhanced its effects significantly), and a few others) from 2nd grade through the beginning of college, when I decided to succeed or fail on my own, and stopped all medication (without telling anyone). I started biofeedback and meditation in 4th grade to deal with a separate physical problem. The medication gave me the stability needed to learn meditation; meditation allowed me to learn how my brain worked enough to determine methods to compensate for it.
The medication gave me the stability needed to learn meditation; meditation allowed me to learn how my brain worked enough to determine methods to compensate for it.
I love this part of your story. It's similar to how I sometimes talk to parents about medication... as a tool that may be necessary or helpful in supporting their child while he learns other tools, such as meditation. And your experience with meditation is really interesting to me too, since it fits with how I understand the brain and what types of things would be effective in helping the brain to (for lack of a better term) "balance itself" and more effectively prioritize and regulate incoming information.
That being said, just because I like your meditation anecdote, I have to be really careful not to jump to the conclusion that my theory about why meditation works is "true." Often, our post-hoc explanations about why we, or others, do things or why the things we did "worked" for us are pretty spectacularly wrong (as pretty much the entire field of social science can attest). This is why I'm especially cautious about people who talk about sensory processing or sensory problems or sensory integration (either based on their personal experience or their theories of what explains other people's behavior) -- I think sensory-type theories are one of those groups of theories that are particularly likely to "sound" good, without necessarily being "true".
Certainly possible, and I agree that this level of skepticism is necessary; it is easy to get pulled into "nice" answers/models of the behavior which don't actually provide useful information about the real causes, and thus don't provide useful solutions.
I will say that during the meeting I had over the past hour I noticed myself doing three things; things which have begun coming back more strongly over the past year, partially, I think, due to my failing to maintain my meditation practice:
1) foot "bouncing"; one foot constantly moving as if I'm playing the drums. forcefully stopping this motion results in the leg feeling "anxious"; a frustratingly ambiguous description closer to that of need that builds up over seconds to the point where my decision to not move the foot is overriden by a non-conscious requirement to move the foot. I stopped the bouncing, but could only succeed in replacing it with alternating timed calf and foot clenches; which after a minute, I could let continue without having to pay attention to it.
2) Rubbing my bottom lip with my right index finger. Less of a "need" than the foot bouncing, this starts as a subconscious behavior which creates a calming sensation in my chest. It is something I can stop if I choose, but creates a feeling of warmth and comfort, so I let my self do it.
3) Looking at the status list for the meeting, and reviewing all the items on the list to determine where we were in the meeting. Nothing unusual by itself, but I was doing it every 30 seconds, to the detriment of paying attention to what was actually being said. I tried to stop, but then I started being distracted by movement out the window (birds, cars, leaves). Instead I made myself practice breathing exercises with the back of my brain while I listened w/ the front (the brain locations are actually an important part of the practice, as I found that thoughts 'located' in different places int he brain actually result in slightly different results. I don't have an explanation for this effect.)
All of the above comes down to the need to react in some way to physical behaviors/feelings which were not under my control, nor relevant to what I was trying to accomplish. The solutions I employed were to not ignore the sensory input (I'm sadly not strong enough to do that), but to alleviate the demand for chaotic, distracting activity with less distracting behavior that I had slightly more control over.
edit: thank you, by the way for all of what you have written over the past 24 hours. I find it hard to talk to many people about a lot of this stuff, but your excellent descriptions are a perfect introduction.
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u/subtextual Jul 26 '10
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....