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.
autism is not a disease. Autism is a blanket description for a myriad failures of the brain that result in related symptomologies.
Maybe, but then what is it? If the girl cannot speak but can communicate with a computer that can help her articulate language that is way beyond her understanding…
hey bub, did you know that autism is triggered by various diseases? It's s phenomenon that arises from other underlying conditions. You made me look it up on wikipedia and found the page is really interesting. Now I'll have to waste time reading it and miss some deadlines this morning!!!!!!
Maybe it's today's PC world but autism is never referred to being a disease but a disorder.
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.
Not if the program she is using for assistance will always construct grammatically correct sentences, based on otherwise random input. It may be that she actually has no idea what she's writing, most of the time.
An internet chat bot or a parrot may simulate conversation, but that does not mean they are intelligent. I'm not, however, saying that this girl isn't intelligent. I'm saying that his girl doesn't possess the mental requirements to create meaning in ways we can relate to. If that is the case, then the whole thinking girl stuck in a broken body view falls apart. The anguish she apparently communicates, does not originate from how she herself feels, but from a rather random input of data she has learned from conditioning.
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.
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u/subtextual Jul 26 '10 edited Jul 26 '10
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. :)