"The truth is, I see myself as a girl that types instead of talking out of my mouth. I don't really see anything so special about that."
April 21, 2011 1:09 PM Subscribe
From an early age, it was clear that Carly Fleishmann had autism. Furthermore, she couldn't speak, and professionals who had diagnosed her considered her moderately to severely cognitively impaired. Therapy helped, but she still wasn't able to speak. Then at age ten, working with a computer equipped with pictures and symbols, she started typing and spelling words. She started with single words, then wrote sentences, describing how she felt, and how she wanted people to treat her. Her story has been presented on a variety of shows, often with insight provided by Carly that she typed with one finger. As her writing ability has improved over the years, she has shared her thoughts through her blog (and as a guest on Larry King's blog), on her own Twitter feed, and Facebook page. Now 16, she recently appeared again on TV, talking through her writing (transcript).
Following the original CTV story in 2008, CTV shared an email that Carly wrote about another news story on autism. Instead of being "the girl known for spelling," she wanted to be like the father of an autistic son who was walking 462 kilometres from Toronto to Ottawa, reaching out to politicians for a national solution for autism.
Following the original CTV story in 2008, CTV shared an email that Carly wrote about another news story on autism. Instead of being "the girl known for spelling," she wanted to be like the father of an autistic son who was walking 462 kilometres from Toronto to Ottawa, reaching out to politicians for a national solution for autism.
What hasn't been presented in any form is the sort of independently verified evidence that Carly herself is composing these long, complex, grammatically correct and rather emotionally mature retrospective statements.
Of course, I am not trying to say that these things are inherently impossible for someone with autism or other mental states. But this bears a suspicious similarity to stories about facilitated communication.
File this under "Amazing If True" if you want, but I want some damn good proof.
posted by overeducated_alligator at 1:38 PM on April 21, 2011 [5 favorites]
Of course, I am not trying to say that these things are inherently impossible for someone with autism or other mental states. But this bears a suspicious similarity to stories about facilitated communication.
File this under "Amazing If True" if you want, but I want some damn good proof.
posted by overeducated_alligator at 1:38 PM on April 21, 2011 [5 favorites]
The "Person With Autism Speaks!" stories always set off huge red flags, since there's been a scam for the longest time where "therapists" guide the hands of autistic kids at a computer and - like an Ouija board! - prose comes out. It's absurd.
posted by LSK at 1:42 PM on April 21, 2011 [1 favorite]
posted by LSK at 1:42 PM on April 21, 2011 [1 favorite]
Hmm. I just figured that she had prepared "answers" because single-finger typing would be too slow.
posted by snsranch at 1:43 PM on April 21, 2011
posted by snsranch at 1:43 PM on April 21, 2011
I didn't think or realize it would be perceived as such a scam. I was critical of some of her writing, but here is what appears to be her interaction through typing, though edited for the TV attention span.
snsranch: Hmm. I just figured that she had prepared "answers" because single-finger typing would be too slow.
The last clip Carly on The Talk is that - you can see the laptop with the questions, and her long answers, all pre-typed.
As I understand it, there isn't one closed definition for autism, but a spectrum of symptoms, but I could be misunderstanding this.
posted by filthy light thief at 1:48 PM on April 21, 2011 [1 favorite]
snsranch: Hmm. I just figured that she had prepared "answers" because single-finger typing would be too slow.
The last clip Carly on The Talk is that - you can see the laptop with the questions, and her long answers, all pre-typed.
As I understand it, there isn't one closed definition for autism, but a spectrum of symptoms, but I could be misunderstanding this.
posted by filthy light thief at 1:48 PM on April 21, 2011 [1 favorite]
Oh, gosh, just watched the clip where she's "interviewed". The answers are all the sort of feel-good fluff a parent would want to hear; not the sort of articulate, direct answers an autistic child would give.
Blargh.
posted by LSK at 1:52 PM on April 21, 2011
Blargh.
posted by LSK at 1:52 PM on April 21, 2011
LSK: The answers are all the sort of feel-good fluff a parent would want to hear
Yeah, that piece on The Talk was fluffy stuff, but it's the most recent video clip of her - most are a few years old now. The much earlier email on CTV's website seems more from (what could be) her point of view.
posted by filthy light thief at 1:57 PM on April 21, 2011
Yeah, that piece on The Talk was fluffy stuff, but it's the most recent video clip of her - most are a few years old now. The much earlier email on CTV's website seems more from (what could be) her point of view.
posted by filthy light thief at 1:57 PM on April 21, 2011
This is interesting because it is not like other examples of this. First of all, it's made clear in several places that this is not a spontaneous miracle, but the result of years of intensive ABA therapy (which is not covered in Ontario, by the way). Second, there are multiple instances of her acting without a facilitator.
I think her work is probably edited and corrected by her family (one of the links is to an apparently raw email where she gets the Prime Minister's name wrong) but I work with neurotypical people with shitty grammar all the time, given that one of my fields is adult literacy. Keep in mind this is not someone who got a chance to learn age-grade spelling and grammar. Her family may intervene and elaborate, but then again, I used to do that all the time in corporate communications for dysgraphic executives -- and there are a lot of them.
The next stage in her development should be to work on her written communications, and perhaps it is.
What I find really interesting is the articulation of a pro-ABA position, which, as something purportedly coming from an autistic person, is probably causing all kinds of crazy dissonance somewhere in the autism related scene and its galaxy of parents, kids, adults with and without autism, people faking autism, people faking communication on behalf of others, and lunatics of various stripes.
posted by mobunited at 1:58 PM on April 21, 2011 [2 favorites]
I think her work is probably edited and corrected by her family (one of the links is to an apparently raw email where she gets the Prime Minister's name wrong) but I work with neurotypical people with shitty grammar all the time, given that one of my fields is adult literacy. Keep in mind this is not someone who got a chance to learn age-grade spelling and grammar. Her family may intervene and elaborate, but then again, I used to do that all the time in corporate communications for dysgraphic executives -- and there are a lot of them.
The next stage in her development should be to work on her written communications, and perhaps it is.
What I find really interesting is the articulation of a pro-ABA position, which, as something purportedly coming from an autistic person, is probably causing all kinds of crazy dissonance somewhere in the autism related scene and its galaxy of parents, kids, adults with and without autism, people faking autism, people faking communication on behalf of others, and lunatics of various stripes.
posted by mobunited at 1:58 PM on April 21, 2011 [2 favorites]
This is Carly's mother -- Carly is not a lab rat nor is she an academic experiment. She is a girl who types instead of speaks with her mouth. That being said, to quell the skeptics out there, we will be posting footage of her typing at length. We are not trying to PROVE anything nor is she a medical miracle -she has lots of nonverbal friends with autism who also type. This skill is a result of years and years of intervention + innate intelligence.-TammyStarr1961 2 days ago
Well OK then. I think there are ample reasons to get sketchy vibes from what's been presented so far, though.
posted by anazgnos at 1:59 PM on April 21, 2011
Well OK then. I think there are ample reasons to get sketchy vibes from what's been presented so far, though.
posted by anazgnos at 1:59 PM on April 21, 2011
I wonder why the experts thought no talking (and other delays) = lower intelligence? It's been a long time since anyone thought that being unable to speak due to deafness indicated that you were literally dumb. Development of physical and mental skills are clearly separate - and different mental skills can develop at very different rates. Some people might excel at university, but be unable to add 6 and 8 to get 14, due to a learning disability.
I feel like you can never know a person's mental ability if you can't measure it. Recently, my grandfather was unable to speak due to a stroke. He exhibited some strange behaviour at times, and my uncle decided he was senile and didn't understand what was going on. But if you watched carefully, he understood us - but he was unable to speak back. So he ignored people when he got bored or frustrated.
Having known people with a variety of disabilities, I'm not at all surprised that she is able to write and type. That's a different process than making words with your mouth - mentally, as well as physically. I know people who can speak paragraphs, but can't write that coherently. I think that providing disabled people who struggle with communication with symbol boards and/or computers should be automatic, just to see if it will help them.
posted by jb at 2:16 PM on April 21, 2011 [2 favorites]
I feel like you can never know a person's mental ability if you can't measure it. Recently, my grandfather was unable to speak due to a stroke. He exhibited some strange behaviour at times, and my uncle decided he was senile and didn't understand what was going on. But if you watched carefully, he understood us - but he was unable to speak back. So he ignored people when he got bored or frustrated.
Having known people with a variety of disabilities, I'm not at all surprised that she is able to write and type. That's a different process than making words with your mouth - mentally, as well as physically. I know people who can speak paragraphs, but can't write that coherently. I think that providing disabled people who struggle with communication with symbol boards and/or computers should be automatic, just to see if it will help them.
posted by jb at 2:16 PM on April 21, 2011 [2 favorites]
I didn't think or realize it would be perceived as such a scam.
Honestly, the longer I am on MetaFilter, the more surprised I am at what all people will accuse of being faked or a scam or something other than what it purports to be. I think I've read three threads today, not including this one, which all have someone, at some point, saying that it's all a big lie or hoax. Often with no real evidence.
posted by hippybear at 2:19 PM on April 21, 2011
Honestly, the longer I am on MetaFilter, the more surprised I am at what all people will accuse of being faked or a scam or something other than what it purports to be. I think I've read three threads today, not including this one, which all have someone, at some point, saying that it's all a big lie or hoax. Often with no real evidence.
posted by hippybear at 2:19 PM on April 21, 2011
Facilitated Communication isn't usually a scam or a lie - it's usually just regular old wishful thinking and self-deception.
Is this a case of FC? I don't know. Is it sad that I'm skeptical because dozens of cases have been shown to be caretaker errors? Of course it is. Should I be chastized for learning my lesson the first dozen times? Obviously I don't think so.
posted by muddgirl at 2:25 PM on April 21, 2011 [1 favorite]
Is this a case of FC? I don't know. Is it sad that I'm skeptical because dozens of cases have been shown to be caretaker errors? Of course it is. Should I be chastized for learning my lesson the first dozen times? Obviously I don't think so.
posted by muddgirl at 2:25 PM on April 21, 2011 [1 favorite]
After a little research I note that her parents say that they did not use Facilitated Communication but rather a Dynavox, which makes speculations about FC pretty moot.
posted by muddgirl at 2:36 PM on April 21, 2011
posted by muddgirl at 2:36 PM on April 21, 2011
I'm having so much trouble with this.
I strongly believe that anything that brings awareness to autism research and the technological and therapeutic advances that might be helping the autistic community is a good thing.
But I do find myself dubious about Carly's voice. I'm skeptical about what she is really typing and what she isn't.
For example, when I watched her type on the linked 20/20 segment, Carly typed nothing for hours. Then, finally, she laboriously asked the interviewer of his son, "is hhe cute" (sic)?
And on her Twitter feed, we have this, "I need your help.Can u all @twitter & tell them Its time 2 give the first autistic verification 2 me. I no that if we all try it will happen."
Okay, those at least sound like a teen. I've seen teens texting with abbreviations and misspellings like that.
But then the Twitter feed has this tweet, completely different in diction, spelling, etc. from just the day before:
"Just finished a long day of taping and now sitting and eating Macaroni and cheese. So lets see if you are all..."
She types slowly, with one finger. When she makes spelling errors she doesn't go back and fix them because it is so much trouble. She abbreviates 2 and u and no for "know". That all seems to fit.
Yet she spells out "Macaroni"?
And then there is this tweet:
"Thanks for having me on the show. I know your producer wanted me to sit in the audience but you... http://fb.me/VIfF9E0e"
So now she is spelling out both "you" and "know" instead of using u and no. Why?
Later on, when her Dad tweets, identifying himself...well, those tweets sound the same as the ones above that are supposedly written by Carly:
"Carly's dad here. thanks to our friend Pat, here's the link to the segment on CBS The Talk in which Carly "chats" with Holly Robinson Peete."
And there are other inconsistencies. In several tweets, Carly is asking people if she can send them a "privet" message. Later, she spells it correctly, "private". And then later still she is back to "privet" again.
And that's just coming from a few days of recent tweets.
It just seems like either there is more than one person writing the Twitter feed, at least, or that an adult is typing them and trying to sound like a teen, but forgets sometimes to include the same misspellings and speech patterns to make it more believable.
I would really love to be wrong about that, though, because I WANT to believe this. And I want other autistic kids to find a voice.
posted by misha at 3:00 PM on April 21, 2011 [9 favorites]
I strongly believe that anything that brings awareness to autism research and the technological and therapeutic advances that might be helping the autistic community is a good thing.
But I do find myself dubious about Carly's voice. I'm skeptical about what she is really typing and what she isn't.
For example, when I watched her type on the linked 20/20 segment, Carly typed nothing for hours. Then, finally, she laboriously asked the interviewer of his son, "is hhe cute" (sic)?
And on her Twitter feed, we have this, "I need your help.Can u all @twitter & tell them Its time 2 give the first autistic verification 2 me. I no that if we all try it will happen."
Okay, those at least sound like a teen. I've seen teens texting with abbreviations and misspellings like that.
But then the Twitter feed has this tweet, completely different in diction, spelling, etc. from just the day before:
"Just finished a long day of taping and now sitting and eating Macaroni and cheese. So lets see if you are all..."
She types slowly, with one finger. When she makes spelling errors she doesn't go back and fix them because it is so much trouble. She abbreviates 2 and u and no for "know". That all seems to fit.
Yet she spells out "Macaroni"?
And then there is this tweet:
"Thanks for having me on the show. I know your producer wanted me to sit in the audience but you... http://fb.me/VIfF9E0e"
So now she is spelling out both "you" and "know" instead of using u and no. Why?
Later on, when her Dad tweets, identifying himself...well, those tweets sound the same as the ones above that are supposedly written by Carly:
"Carly's dad here. thanks to our friend Pat, here's the link to the segment on CBS The Talk in which Carly "chats" with Holly Robinson Peete."
And there are other inconsistencies. In several tweets, Carly is asking people if she can send them a "privet" message. Later, she spells it correctly, "private". And then later still she is back to "privet" again.
And that's just coming from a few days of recent tweets.
It just seems like either there is more than one person writing the Twitter feed, at least, or that an adult is typing them and trying to sound like a teen, but forgets sometimes to include the same misspellings and speech patterns to make it more believable.
I would really love to be wrong about that, though, because I WANT to believe this. And I want other autistic kids to find a voice.
posted by misha at 3:00 PM on April 21, 2011 [9 favorites]
I'm with you misha. I'm sure she's typing some of it, and I imagine unless the mother shows footage of her typing long segments we won't really know. I have cognitive problems and sometimes I spell poorly and I can't see it even when I reread it, and sometimes I can spell everything write. (I'll leave that as an example)
I've been trying to do my own research on what's up with this. One day I'll unravel the mysteries of my brain and hopefully help anyone else who struggles with such brain weirdness.
Of course the hope is to do more research on improving prenatal environments and childhood environments because for obvious reasons, you just don't get the same "neural plasticity" (buzzword as it were) in adults.
posted by xarnop at 3:10 PM on April 21, 2011 [1 favorite]
I've been trying to do my own research on what's up with this. One day I'll unravel the mysteries of my brain and hopefully help anyone else who struggles with such brain weirdness.
Of course the hope is to do more research on improving prenatal environments and childhood environments because for obvious reasons, you just don't get the same "neural plasticity" (buzzword as it were) in adults.
posted by xarnop at 3:10 PM on April 21, 2011 [1 favorite]
(Of course the more we study epigenetics it goes even further--- the more we want to protect the health of the mother and fathers in the years before they get pregnant, and... in their childhoods. Epigenetics is so cool I could pop.)
posted by xarnop at 3:12 PM on April 21, 2011 [1 favorite]
posted by xarnop at 3:12 PM on April 21, 2011 [1 favorite]
And I want other autistic kids to find a voice.
@misha: Therein lies the rub. For many autistic kids, it's not that they don't have a voice, it's that the way they think - and hence, their voice - is just different from ours. Asking autistic children to "find a voice" requires forcing a perspective on someone who experiences the world in a functionally different manner. This isn't to say that autistic people can't understand the world, but just that the nature and purpose of self-expression is something so different between neurotypical and autistic people that expecting "finding a voice" to equate to posting on Twitter and appearing on talk shows is a fool's errand.
posted by LSK at 3:14 PM on April 21, 2011 [4 favorites]
@misha: Therein lies the rub. For many autistic kids, it's not that they don't have a voice, it's that the way they think - and hence, their voice - is just different from ours. Asking autistic children to "find a voice" requires forcing a perspective on someone who experiences the world in a functionally different manner. This isn't to say that autistic people can't understand the world, but just that the nature and purpose of self-expression is something so different between neurotypical and autistic people that expecting "finding a voice" to equate to posting on Twitter and appearing on talk shows is a fool's errand.
posted by LSK at 3:14 PM on April 21, 2011 [4 favorites]
I think what makes this so hard is that, on one hand I am culturally neuro-privileged and it's harmful for me to pass judgement on someone who isn't.
But on the other hand it is incredibly sad to think of a care-taker co-opting a vulnerable person, whether intentionally or unintentionally.
posted by muddgirl at 3:16 PM on April 21, 2011 [1 favorite]
But on the other hand it is incredibly sad to think of a care-taker co-opting a vulnerable person, whether intentionally or unintentionally.
posted by muddgirl at 3:16 PM on April 21, 2011 [1 favorite]
I would really love to be wrong about that, though, because I WANT to believe this. And I want other autistic kids to find a voice.
Have you considered believing in autocomplete?
With the various solutions available to people of all backgrounds who need or want help writing, the idea that the text you see is literally what gets punched into a keyboard is . . . last century. For anyone.
posted by mobunited at 3:16 PM on April 21, 2011 [1 favorite]
Have you considered believing in autocomplete?
With the various solutions available to people of all backgrounds who need or want help writing, the idea that the text you see is literally what gets punched into a keyboard is . . . last century. For anyone.
posted by mobunited at 3:16 PM on April 21, 2011 [1 favorite]
Have you considered believing in autocomplete?
I dunno... Having spent hours reading DamnYouAutoCorrect, I'd expect to see a lot more references to bodily functions and genitalia if she were using autocomplete.
posted by hippybear at 3:33 PM on April 21, 2011 [3 favorites]
I dunno... Having spent hours reading DamnYouAutoCorrect, I'd expect to see a lot more references to bodily functions and genitalia if she were using autocomplete.
posted by hippybear at 3:33 PM on April 21, 2011 [3 favorites]
Woah. This is the kind of story I feel at once falls short on credibility and overcomes on the emotional and logical level. Yes logical. What is authentic and true should not be short changed by what we, by this I mean geekdom, expect of ourselves.
As an expressive individual, I know there is a difference between the subjects I will choose to express in a speech act, dialog, debate, and those thoughts I am able to express in writing or through the written iterative process--such as responses to Metafilter posts I wish to post, and yet decide are complete $!#% thoughts and leave 'em be.
Other times I just can't pick just one problem. I can't get my fingers to move fast enough, and I'll suffer to edit my words, reread, reedit, recast, because I wish to express myself despite the difficulties of capturing my fleeting thoughts. And, it gets easier to express yourself the more you express yourself. This is the logical level at which I understand and accept Carly's gift even though it suffers credibility. I know the joy of communicating is reward itself--overcomes.
posted by xtian at 3:43 PM on April 21, 2011
As an expressive individual, I know there is a difference between the subjects I will choose to express in a speech act, dialog, debate, and those thoughts I am able to express in writing or through the written iterative process--such as responses to Metafilter posts I wish to post, and yet decide are complete $!#% thoughts and leave 'em be.
Other times I just can't pick just one problem. I can't get my fingers to move fast enough, and I'll suffer to edit my words, reread, reedit, recast, because I wish to express myself despite the difficulties of capturing my fleeting thoughts. And, it gets easier to express yourself the more you express yourself. This is the logical level at which I understand and accept Carly's gift even though it suffers credibility. I know the joy of communicating is reward itself--overcomes.
posted by xtian at 3:43 PM on April 21, 2011
mobunited, you make a good point. Autocomplete is something I hadn't really considered.
When my son, who has an auditory processing disorder, was younger, he was offered a special keyboard to help him. He's right-handed, but holds a pencil like a left-handed person, and his hand would grow tired from writing. So they thought typing would help him to express himself in writing. And since he was creative and wrote stories, etc., we all wanted to encourage him to keep writing.
Anyway, the keyboard they gave him not only did not autocomplete, it didn't show more than a few words at a time on the little window above the keyboard. I'm probably not explaining this well, but it was like typing on, say, a word processor when your computer is lagging and the words only show up after a pause. What he saw WAS literally what he punched into that keyboard, and the words only showed up after a slight delay.
So he grew frustrated with the keyboard, because his thoughts went faster than he could type on that thing, and we ended up not using it.
I guess, because of that experience, I didn't expect Carly's keyboard to autocomplete for her.
My son later took typing and is now very fast with both typing on an actual laptop and texting on his phone, though, so I get what you are saying and you have a point. I should have thought of that!
posted by misha at 3:48 PM on April 21, 2011
When my son, who has an auditory processing disorder, was younger, he was offered a special keyboard to help him. He's right-handed, but holds a pencil like a left-handed person, and his hand would grow tired from writing. So they thought typing would help him to express himself in writing. And since he was creative and wrote stories, etc., we all wanted to encourage him to keep writing.
Anyway, the keyboard they gave him not only did not autocomplete, it didn't show more than a few words at a time on the little window above the keyboard. I'm probably not explaining this well, but it was like typing on, say, a word processor when your computer is lagging and the words only show up after a pause. What he saw WAS literally what he punched into that keyboard, and the words only showed up after a slight delay.
So he grew frustrated with the keyboard, because his thoughts went faster than he could type on that thing, and we ended up not using it.
I guess, because of that experience, I didn't expect Carly's keyboard to autocomplete for her.
My son later took typing and is now very fast with both typing on an actual laptop and texting on his phone, though, so I get what you are saying and you have a point. I should have thought of that!
posted by misha at 3:48 PM on April 21, 2011
And I want other autistic kids to find a voice.
@misha: Therein lies the rub. For many autistic kids, it's not that they don't have a voice, it's that the way they think - and hence, their voice - is just different from ours. Asking autistic children to "find a voice" requires forcing a perspective on someone who experiences the world in a functionally different manner. This isn't to say that autistic people can't understand the world, but just that the nature and purpose of self-expression is something so different between neurotypical and autistic people that expecting "finding a voice" to equate to posting on Twitter and appearing on talk shows is a fool's errand.
I agree with you, LSK. My nephew is on the autism spectrum (very high-functioning, bright kid) and I get what you mean about the difference in perception and expression.
But that just adds to my initial impression that "Carly's voice" may be a (probably well-intentioned) attempt to make Carly, and other kids like her, more relatable to the neurotypical population, and is possibly misrepresenting what she really thinks and believes in the process.
posted by misha at 3:56 PM on April 21, 2011 [2 favorites]
@misha: Therein lies the rub. For many autistic kids, it's not that they don't have a voice, it's that the way they think - and hence, their voice - is just different from ours. Asking autistic children to "find a voice" requires forcing a perspective on someone who experiences the world in a functionally different manner. This isn't to say that autistic people can't understand the world, but just that the nature and purpose of self-expression is something so different between neurotypical and autistic people that expecting "finding a voice" to equate to posting on Twitter and appearing on talk shows is a fool's errand.
I agree with you, LSK. My nephew is on the autism spectrum (very high-functioning, bright kid) and I get what you mean about the difference in perception and expression.
But that just adds to my initial impression that "Carly's voice" may be a (probably well-intentioned) attempt to make Carly, and other kids like her, more relatable to the neurotypical population, and is possibly misrepresenting what she really thinks and believes in the process.
posted by misha at 3:56 PM on April 21, 2011 [2 favorites]
I'm afraid I disagree with that, Misha and LSK. How can someone who has never learned words use them? And what are thoughts but words we say to ourselves?
posted by rebent at 4:18 PM on April 21, 2011
posted by rebent at 4:18 PM on April 21, 2011
And what are thoughts but words we say to ourselves?
Oh great. Now this whole thread is about Semiotics. Thanks.
posted by hippybear at 4:28 PM on April 21, 2011 [3 favorites]
Oh great. Now this whole thread is about Semiotics. Thanks.
posted by hippybear at 4:28 PM on April 21, 2011 [3 favorites]
And what are thoughts but words we say to ourselves?
This is an understandable extrapolation, but it's not true for everyone. Dr. Grandin often tries to describe her own structure of thought
This is an understandable extrapolation, but it's not true for everyone. Dr. Grandin often tries to describe her own structure of thought
When I was much younger, I assumed that everybody perceived the world the same way I did, that everybody thought in pictures.posted by muddgirl at 4:37 PM on April 21, 2011 [5 favorites]
If Carly truly speaks through her mouth-operated keyboard, a simple video of her answering questions, sans canned responses, would disprove that.
Doesn't matter if it takes hours for her to reply. A viewer can move to the location where she does reply.
The world is not restrained to 10-min Youtube videos. There are ways to dispel critics, and the most damning evidence is the lengths to which her mother hasn't gone to dispel them.
Absence of proof is not proof of absence, etc...
posted by IAmBroom at 5:22 PM on April 21, 2011
Doesn't matter if it takes hours for her to reply. A viewer can move to the location where she does reply.
The world is not restrained to 10-min Youtube videos. There are ways to dispel critics, and the most damning evidence is the lengths to which her mother hasn't gone to dispel them.
Absence of proof is not proof of absence, etc...
posted by IAmBroom at 5:22 PM on April 21, 2011
If Carly truly speaks through her mouth-operated keyboard, a simple video of her answering questions, sans canned responses, would disprove that.
She uses a normal keyboard, but types with one finger.
Also, her parents said this: "That being said, to quell the skeptics out there, we will be posting footage of her typing at length", that's a comment on this youtube video
posted by delmoi at 6:00 PM on April 21, 2011 [1 favorite]
She uses a normal keyboard, but types with one finger.
Also, her parents said this: "That being said, to quell the skeptics out there, we will be posting footage of her typing at length", that's a comment on this youtube video
posted by delmoi at 6:00 PM on April 21, 2011 [1 favorite]
Oh and actually you can see an autocomplete window popping up on the screen in that video, btw.
posted by delmoi at 6:03 PM on April 21, 2011
posted by delmoi at 6:03 PM on April 21, 2011
It's been a long time since anyone thought that being unable to speak due to deafness indicated that you were literally dumb.
Actually, "dumb" used to mean unable to speak, and it turned into lacking intelligence.
posted by gjc at 7:41 PM on April 21, 2011 [1 favorite]
Actually, "dumb" used to mean unable to speak, and it turned into lacking intelligence.
posted by gjc at 7:41 PM on April 21, 2011 [1 favorite]
From what I've seen, I believe Carly can comprehend written and spoken English and that she can write it. She produces a lot of typos before autocorrect and autocomplete help her out, and she called Stephen Harper "Brain Harper", which may actually be more accurate in at least one way, if you're pondering what I'm pondering.
Still, she writes. This is not facilitated communication: she types for herself. Her autism is interfering with her native intelligence; it hasn't destroyed it. The intensive therapy she's had for years has been crucial for developing her language skills as well: she wouldn't be typing without years of ABA.
What's complicating things is that she is apparently uncomfortable typing on demand for strangers, with the result that "is hhe cute" was the only text she produced for one reporter. And it appears that her parents may be tweeting on her behalf at least part of the time and cleaning up her output other times. I wish they wouldn't do that, as not only is it leading to a lot of doubt about her abilities, but she's a freakin' teenager: let her speak for herself, flaws and all. (Hell, Rebecca Black, another 13 year old, apparently has a nice, natural singing voice, but mom and dad paid for a professional recording with shitloads of autotune and that's how we're going to hear her, damn it. )
And in case you still think autistic people with speech difficulties can't communicate clearly, people like Amanda Baggs should change your mind.
posted by maudlin at 7:46 PM on April 21, 2011 [7 favorites]
Still, she writes. This is not facilitated communication: she types for herself. Her autism is interfering with her native intelligence; it hasn't destroyed it. The intensive therapy she's had for years has been crucial for developing her language skills as well: she wouldn't be typing without years of ABA.
What's complicating things is that she is apparently uncomfortable typing on demand for strangers, with the result that "is hhe cute" was the only text she produced for one reporter. And it appears that her parents may be tweeting on her behalf at least part of the time and cleaning up her output other times. I wish they wouldn't do that, as not only is it leading to a lot of doubt about her abilities, but she's a freakin' teenager: let her speak for herself, flaws and all. (Hell, Rebecca Black, another 13 year old, apparently has a nice, natural singing voice, but mom and dad paid for a professional recording with shitloads of autotune and that's how we're going to hear her, damn it. )
And in case you still think autistic people with speech difficulties can't communicate clearly, people like Amanda Baggs should change your mind.
Like many people with autism, Baggs doesn't like to look you in the eye and needs help with tasks like preparing a meal and taking a shower. In conversation she'll occasionally grunt or sigh, but she stopped speaking altogether in her early twenties. Instead, she types 120 words a minute, which the DynaVox then translates into a synthesized female voice that sounds like a deadpan British schoolteacher. ...Amanda isn't exactly like Carly: she once had speech, but for whatever reason, she stopped talking. And her writing and video productions skills are much better than most neurotypical people. But she still has many difficulties with many daily tasks, and her overt behaviours lead experts diagnosing her remotely to vastly underestimate what she's capable of doing. I wouldn't rush to underestimate Carly the same way.
I tell her that I asked one of the world's leading authorities on autism to check out the video. The expert's opinion: Baggs must have had outside help creating it, perhaps from one of her caregivers. Her inability to talk, coupled with repetitive behaviors, lack of eye contact, and the need for assistance with everyday tasks are telltale signs of severe autism. Among all autistics, 75 percent are expected to score in the mentally retarded range on standard intelligence tests — that's an IQ of 70 or less.
People like Baggs fall at one end of an array of developmental syndromes known as autism spectrum disorders. The spectrum ranges from someone with severe disability and cognitive impairment to the socially awkward eccentric with Asperger's syndrome.
After I explain the scientist's doubts, Baggs grunts, and her mouth forms just a hint of a smirk as she lets loose a salvo on the keyboard. No one helped her shoot the video, edit it, and upload it to YouTube. She used a Sony Cybershot DSC-T1, a digital camera that can record up to 90 seconds of video (she has since upgraded). She then patched the footage together using the editing programs RAD Video Tools, VirtualDub, and DivXLand Media Subtitler. "My care provider wouldn't even know how to work the software," she says.
posted by maudlin at 7:46 PM on April 21, 2011 [7 favorites]
hippybear: " Honestly, the longer I am on MetaFilter, the more surprised I am at what all people will accuse of being faked or a scam or something other than what it purports to be. "
That's probably because you weren't here to fall for Kaycee Nicole.
posted by IndigoRain at 8:14 PM on April 21, 2011
That's probably because you weren't here to fall for Kaycee Nicole.
posted by IndigoRain at 8:14 PM on April 21, 2011
So, we cast aspersions on any story that doesn't seem to fit the bell curve of our expectations? (*)
What is to be gained by all this cynicism? I hope nobody in that family reads this, it is embarrassing to us all.
(*) Which seem to be mighty low for people on the autism spectrum...
posted by gjc at 8:36 PM on April 21, 2011
What is to be gained by all this cynicism? I hope nobody in that family reads this, it is embarrassing to us all.
(*) Which seem to be mighty low for people on the autism spectrum...
posted by gjc at 8:36 PM on April 21, 2011
I'm not saying that. I was not here either, to experience the Kaycee Nicole incident. However, I am speculating that that is why many people here are somewhat skeptical. Plus, the proven cases of Facilitated Communication in the past, where videos are shown of a nurse typing on a computer with the hand of a man who is clearly sleeping.
posted by IndigoRain at 8:40 PM on April 21, 2011
posted by IndigoRain at 8:40 PM on April 21, 2011
Oh, no. I was here for it. I just wasn't a member at that point.
posted by hippybear at 8:43 PM on April 21, 2011
posted by hippybear at 8:43 PM on April 21, 2011
Amanda isn't exactly like Carly: she once had speech, but for whatever reason, she stopped talking.
Oh, let's not go into their differences at all.
posted by mobunited at 8:48 PM on April 21, 2011 [1 favorite]
Oh, let's not go into their differences at all.
posted by mobunited at 8:48 PM on April 21, 2011 [1 favorite]
That would be Metafilter's own Amanda Baggs, btw.
posted by echolalia67 at 9:41 PM on April 21, 2011 [1 favorite]
posted by echolalia67 at 9:41 PM on April 21, 2011 [1 favorite]
When Carly was in the news last summer, there was a really interesting series of comments on Reddit by a paediatric neuropsychologist who was very sceptical. Not because autistic kids can't think and feel and (sometimes) learn to communicate, but because autistic brains work differently, and there are an awful lot of ways in which that would affect Carly's 'voice'. Autistic kids aren't just neurotypical kids trapped in non-functioning bodies, and yet that's just what Carly sounds like here.
I was going to add "I wish this story was true", but on second thoughts I really don't. If it's true then our understanding of and research into autism has all been so severely misguided that it must have done terrible damage to autistic people everywhere; if it's true, severely autistic folk are neurotypicals locked in a prison of their own body and unable, in all cases but this one, to tell anyone about it. That doesn't seem heartwarming to me; that seems like hell.
posted by Catseye at 2:27 AM on April 22, 2011 [2 favorites]
I was going to add "I wish this story was true", but on second thoughts I really don't. If it's true then our understanding of and research into autism has all been so severely misguided that it must have done terrible damage to autistic people everywhere; if it's true, severely autistic folk are neurotypicals locked in a prison of their own body and unable, in all cases but this one, to tell anyone about it. That doesn't seem heartwarming to me; that seems like hell.
posted by Catseye at 2:27 AM on April 22, 2011 [2 favorites]
if it's true, severely autistic folk are neurotypicals locked in a prison of their own body and unable, in all cases but this one, to tell anyone about it. That doesn't seem heartwarming to me; that seems like hell.Well there are lots of 'neurotypical' people trapped in non-functioning bodies. Stephen Hawking, for example. And certainly, it's sad. But it's not like it doesn't happen.
posted by delmoi at 3:21 AM on April 22, 2011
Well, yes, but people like Hawking can communicate, can interact with the world around them. The nightmare scenario we're talking about here would be more like locked-in syndrome.
posted by Catseye at 5:07 AM on April 22, 2011
posted by Catseye at 5:07 AM on April 22, 2011
If you've ever met more than one kid with autism or Asperger's you'd realize that despite their diagnosis, they're completely unique individuals. So when I read about someone like Carly or Amanda, I feel more a sense of wonder rather then surprise (or skepticism). I expect more stories like this in the future as technology opens up avenues of communication for people who have something to say but couldn't find a way to say it.
posted by tommasz at 6:06 AM on April 22, 2011
posted by tommasz at 6:06 AM on April 22, 2011
Thanks for the link, Catseye. I'm still reading through it, but it has raised some questions for me. I can see Carly typing simple things, like the example I mentioned above, but I'm more doubtful now of her email about Harper (damn it!).
I am nowhere near being an expert on autism or associated conditions, but while it is completely, empirically obvious that someone like Amanda is a strong and clear communicator, Carly faces unique hurdles that make the communications I assumed were just cleaned up much less plausible. I hope she can continue to communicate at least some of what she needs to say. If her parents were to withdraw her from the public eye for a few years, or for good, I'd be pretty happy about that.
posted by maudlin at 7:51 AM on April 22, 2011
I am nowhere near being an expert on autism or associated conditions, but while it is completely, empirically obvious that someone like Amanda is a strong and clear communicator, Carly faces unique hurdles that make the communications I assumed were just cleaned up much less plausible. I hope she can continue to communicate at least some of what she needs to say. If her parents were to withdraw her from the public eye for a few years, or for good, I'd be pretty happy about that.
posted by maudlin at 7:51 AM on April 22, 2011
Yeah, she's using what is generally called "word prediction" as part of a system of an "augmentative and alternative communication" (AAC) system. We develop this kind of software at work. (So disclaimer: we're a competitor to Dynavox, which it looks like she's using.)
As you type a list of words comes up that matches what you've typed already. This is different from autocorrect, which changes what you've typed already into the corrected spelling (e.g. type "teh " into Word, or type "teh " into an iPhone).
You can see word prediction in action if you turn on the onscreen keyboard accessibility tool in Windows 7, or try Google Scribe to see it in a web browser.
The list will only contain words from a set vocabulary or vocabularies. So if you want a word, like "Brian", that won't be on the list, you have to type it all - but "Brain" will. So you want the name of the Prime Minister of Canada, and you type "b", then "r" - and there's "Brain", which you might think is close enough or think says "Brian".
Word lists also work by frequency, so words that you use most often are more likely to appear. So if you type "i" you might see "inside" rather than "illuminated" in the list of ten words you want. Now, you might type "h" and not get offered "he". Only ten words (in this case) are suggested at any time, and "he" might not be very common, or - another option - you might have set it to only suggest words greater than two letters because hey, you can type two letters, and otherwise there is always "he" and "is" in the list taking up slots that might be used for a word you can't type. So you might correctly move to "e", or you might whack "h" again, because you know you want a word beginning with "h", and there aren't any English words starting with "hh", so no words get offered to you, so you have to find the "e" yourself. So you might end up with "hhe". Or you might just have hit "hh" by accident.
Now, as you'll very quickly see, typing like this takes an absolute age. So one technique is to build up whole sentences, which you can trigger with a press of a key - pre-recorded, if you like. That's very very common. If you have an iPad, there are a bunch of apps that can do this, for example. Stephen Hawkins uses the same kind of system.
Finally, the video clips we have are very much edited and amended. Actor's voices replace speech synthesis, text on the screen is mocked up. I don't think we can diagnose what's going on there from these clips.
So, I don't know what's "really" going on. Families and carers always interpret and help, and always have an agenda, that's true.
But I can confirm, as a practitioner in the field, that the technology being used and how it is being used is entirely plausible. My heart goes out to Carly and her amazing parents.
posted by alasdair at 9:14 AM on April 22, 2011
As you type a list of words comes up that matches what you've typed already. This is different from autocorrect, which changes what you've typed already into the corrected spelling (e.g. type "teh " into Word, or type "teh " into an iPhone).
You can see word prediction in action if you turn on the onscreen keyboard accessibility tool in Windows 7, or try Google Scribe to see it in a web browser.
The list will only contain words from a set vocabulary or vocabularies. So if you want a word, like "Brian", that won't be on the list, you have to type it all - but "Brain" will. So you want the name of the Prime Minister of Canada, and you type "b", then "r" - and there's "Brain", which you might think is close enough or think says "Brian".
Word lists also work by frequency, so words that you use most often are more likely to appear. So if you type "i" you might see "inside" rather than "illuminated" in the list of ten words you want. Now, you might type "h" and not get offered "he". Only ten words (in this case) are suggested at any time, and "he" might not be very common, or - another option - you might have set it to only suggest words greater than two letters because hey, you can type two letters, and otherwise there is always "he" and "is" in the list taking up slots that might be used for a word you can't type. So you might correctly move to "e", or you might whack "h" again, because you know you want a word beginning with "h", and there aren't any English words starting with "hh", so no words get offered to you, so you have to find the "e" yourself. So you might end up with "hhe". Or you might just have hit "hh" by accident.
Now, as you'll very quickly see, typing like this takes an absolute age. So one technique is to build up whole sentences, which you can trigger with a press of a key - pre-recorded, if you like. That's very very common. If you have an iPad, there are a bunch of apps that can do this, for example. Stephen Hawkins uses the same kind of system.
Finally, the video clips we have are very much edited and amended. Actor's voices replace speech synthesis, text on the screen is mocked up. I don't think we can diagnose what's going on there from these clips.
So, I don't know what's "really" going on. Families and carers always interpret and help, and always have an agenda, that's true.
But I can confirm, as a practitioner in the field, that the technology being used and how it is being used is entirely plausible. My heart goes out to Carly and her amazing parents.
posted by alasdair at 9:14 AM on April 22, 2011
So, we cast aspersions on any story that doesn't seem to fit the bell curve of our expectations? (*)
What is to be gained by all this cynicism? I hope nobody in that family reads this, it is embarrassing to us all.
If Carly's case is extraordinary, and it's worthy of attention, then it's worthy of verification. If what she was doing was mundane, it wouldn't require any verification, or be in any way surprising or interesting.
As it stands there is large gap between what is known about how non-verbal austistics process language, and verbosity and fluidity of speech displayed in Carly's longer writings. (the reddit discussion catseye linked to is crucial in explaining this) There is gap between those long writings and the kind of typing we can actually see Carly do, on video. That is just where things stand. Perhaps eventually those gaps will be addressed but for now, it is reasonable to question what is being shown.
posted by anazgnos at 10:34 AM on April 22, 2011 [1 favorite]
What is to be gained by all this cynicism? I hope nobody in that family reads this, it is embarrassing to us all.
If Carly's case is extraordinary, and it's worthy of attention, then it's worthy of verification. If what she was doing was mundane, it wouldn't require any verification, or be in any way surprising or interesting.
As it stands there is large gap between what is known about how non-verbal austistics process language, and verbosity and fluidity of speech displayed in Carly's longer writings. (the reddit discussion catseye linked to is crucial in explaining this) There is gap between those long writings and the kind of typing we can actually see Carly do, on video. That is just where things stand. Perhaps eventually those gaps will be addressed but for now, it is reasonable to question what is being shown.
posted by anazgnos at 10:34 AM on April 22, 2011 [1 favorite]
Whether this story is true or not, as an educator I find it very plausible. I once had an autistic student in my general education classroom who did have some speech but had incredible difficulty completing any pencil and paper tasks, especially writing an essay. But he would tell the most wonderful dramatic stories so I began letting him dictate them to me. It was slow going, one word at a time. It would sometimes take days for us to get one story typed out. So one day, I'm busy with another student and the autistic student is waiting at my desk. I told him to go ahead and start typing until I could get there. He starts in, one letter after another, and after about ten minutes of hunt and peck, I quietly heard him say, "I have finally found my voice." He typed his own stories after that.
Another severely autistic student I knew when he was in seventh grade, failed the state mandated writing test, not because he wouldn't or couldn't write, but because he typed a five page essay on why he should have been allowed to choose his own topic instead of having to follow the mandated writing prompt.
There is something about the computer and the keyboard that speaks to some of these kids. Who are we to doubt?
posted by tamitang at 6:13 PM on April 22, 2011 [1 favorite]
Another severely autistic student I knew when he was in seventh grade, failed the state mandated writing test, not because he wouldn't or couldn't write, but because he typed a five page essay on why he should have been allowed to choose his own topic instead of having to follow the mandated writing prompt.
There is something about the computer and the keyboard that speaks to some of these kids. Who are we to doubt?
posted by tamitang at 6:13 PM on April 22, 2011 [1 favorite]
No one is saying it is impossible for an autistic child to type. Those of us who find this hard to credit are specifically pointing out inconsistencies that make it look like CARLY is not typing everything that has been credited to her in this particular case.
I found this comment on, of all places, Reddit, educational. The author goes into detail about how the minds of those on the autism spectrum process language and concepts.
About skepticism: I was raised to view the world with what I happen to think is a healthy skepticism. I like to see facts and evidence backing up assertions before I simply accept them at face value.
Others, of course, may disagree with this outlook. If you disagree, it would be more productive to say WHY than to cast aspersions on those of us who may be skeptical. For instance, if you feel that there are no inconsistencies in what Carly has typed, perhaps just say so.
Posting something like, "What is to be gained by all this cynicism? I hope nobody in that family reads this, it is embarrassing to us all" is not, in my opinion, productive. It focuses attention on the commenters rather than the post.
Please follow the site guidelines and "keep your comments on the subject at hand."
posted by misha at 8:05 PM on April 22, 2011 [1 favorite]
I found this comment on, of all places, Reddit, educational. The author goes into detail about how the minds of those on the autism spectrum process language and concepts.
About skepticism: I was raised to view the world with what I happen to think is a healthy skepticism. I like to see facts and evidence backing up assertions before I simply accept them at face value.
Others, of course, may disagree with this outlook. If you disagree, it would be more productive to say WHY than to cast aspersions on those of us who may be skeptical. For instance, if you feel that there are no inconsistencies in what Carly has typed, perhaps just say so.
Posting something like, "What is to be gained by all this cynicism? I hope nobody in that family reads this, it is embarrassing to us all" is not, in my opinion, productive. It focuses attention on the commenters rather than the post.
Please follow the site guidelines and "keep your comments on the subject at hand."
posted by misha at 8:05 PM on April 22, 2011 [1 favorite]
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posted by anazgnos at 1:36 PM on April 21, 2011 [1 favorite]