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Is "Carly's Voice" a Hoax?
Cognisseur
Registered User regular
Registered User regular
So, I saw this clip circulate the web a while back and it's made it around for a 2nd rotation. I just re-watched clip and all of my skeptic red flags are going off for a variety of reasons for the second time.
However, every time I've seen comments/discussion about it, the vast majority of people seem to think it's legitimate, including a bunch of people with direct experience with autistic people. So now I'm not sure what to believe.
I won't post my reasons I think this isn't entirely what it looks like right now so that I don't bias people's opinions, but I'll edit this post in the morning to add it; I'm interested in what people think without my biasing it up first.
http://www.youtube.com/watch?v=jq--75v4lI8&
However, every time I've seen comments/discussion about it, the vast majority of people seem to think it's legitimate, including a bunch of people with direct experience with autistic people. So now I'm not sure what to believe.
I won't post my reasons I think this isn't entirely what it looks like right now so that I don't bias people's opinions, but I'll edit this post in the morning to add it; I'm interested in what people think without my biasing it up first.
http://www.youtube.com/watch?v=jq--75v4lI8&
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I know some people have suggested that these type of typing autistic people are somehow being influenced by their caretakers. I mean, without some kind of direct observation by an objective party it is hard to say 100%.
You may also be concerned about the goading that seemed involved because of this. My girlfriends brother is autistic and, while he is significantly less disabled than this girl, it does take some goading to have a conversation with him. He will just go about talking about whatever he wants to talk about. You have to keep asking him to answer a question sometimes.
But in general, nothing here seems too outrageous.
but they're listening to every word I say
In any case, this is really more a D&D kind of thing, so I'm going to move it.
it might be horrible of me, but...
But if she's typing all on her own, then I would imagine it's legit.
And all her "writings" seem extremely motivational and "inspirational." I guess there being a definite agenda (trying to give parents of autistic kids some sense of purpose, or vindication, I think) doesn't in itself mean it's a fake... but the lack of actual video of her typing something beyond "is hhe cute" (which wasn't shown in real-time) doesn't really make a strong defense.
This shit's apparently not really new, though, since Law & Order was takin' jabs at it as of 1995.
This always happens. Like the guy who 'woke up' from the coma early this year and all he would 'say' was "I am not a plant" and other such inspirational/hopeful/vague stuff.
Now, a severely autistic person has a much better chance of actually secretly being able to communicate, but still, I remain sceptical, if only because of such parallels.
That right there? That's a heavily coached autistic girl.
Can you enlighten the rest of us who have no anecdotal experiences?
As someone who also has experience with autistic spectrum disorders, I agree. She's basically been schooled in how to talk to others, and that's great for some things, but does not make her a miracle. She's probably really smart in one way or another, but doesn't possess the social skills to share and doesn't really care to share it anyways.
Facilitated communication is, unfortunately, not actually a real thing. It's people with good intentions trying as hard as they can to not notice that they're projecting their own idea of what the autistic kid really feels and just can't express to them.
It's why the messages are never "god, I fucking hate my parents."
I suppose if it's really just her typing it all out... I'm willing to bet, though, that they're heavily helping out or "cleaning up" her language or "pointing out" when she makes a mistake or whatnot. When stuff is miraculous in just exactly the way you always hoped I'm extremely skeptical.
That said, they're not selling anything, as far as I can tell. I'll see what's up when someone writes a paper on her.
Edit: Oh, and I guess I should say that no it is pretty much definitely not a "hoax" in the sense that there's any malicious intent. If it's similar to Facilitated Communication it's more a surfeit of hopefulness than any actual attempt to deceive people.
This does seem to be a correct evaluation of the evidence at hand. IIRC, there have been instances where it has been attempted to prove that this is real by using information that the autistic child knows and the facilitator does not. The study I read about had the autistic child shown a simple word (for example, basket), as well as having the word spoken to them. When the facilitator is brought in and the child is asked to type the word, they come up with a different word entirely.
I suppose you could say that the kid is simply uninterested in participating, or has difficulty remembering such things, but regardless, there doesn't seem to be any evidence to suggest that the facilitator is doing anything other than moving the child's hand themselves. I would like to emphasize the point that the people doing it don't seem to be malicious. It's likely an instance of ideomotor response (the "ouija board" effect mentioned by others in this thread).
As someone who has an autistic sister I can understand the unbelievable emotion involved in the possibility of being able to communicate better with a family member, so I think for my own faith in humanity I have to assume that this is an involuntary response and not an attempt to exploit that emotion.
Guy is snake oil salesman extraordinaire
I've worked with autistic adolescents with and without intellectual disabilities in a variety of settings, so I'm very well aware of the wide variability in presentation and abilities.
That said, things just didn't add up here.
1. She didn't communicate at all except for using the touch-screen computer pictures, for 11 years. And yet somehow I'm supposed to believe in 2-3 years since discovering she could type that she's become an eloquent writer better than most college students? This one we can say is due to facilitated communication, except...
2. Even with some help regarding word-choice, the very nature of what she's saying is way outside of what I would expect her to understand. The ideas she discusses are quite complicated and often require a decent understanding of a variety of topics. I very much doubt that anyone has been teaching her age-appropriate subjects her entire life in the off-chance that she secretly understands it all. Between her tantrums, difficulty using even the computer to communicate, and actions like feces-smearing, I think it would be beyond irresponsible for any tutor to have been teaching her things like 7th grade science in 7th grade. So where does she get these ideas from?
3. Her style of communication couldn't be less opposite of what one would expect from a person with autism. She takes others' perspectives, she judges motivations, she utilizes an emotion vocabulary in describing herself. One may think it's easy to process "people are wrongly blaming the autistic child for his sibling's death when he had a seizure and his parents cared for him", but it's actually quite difficult. Suffice it to say it'd take 3-4 paragraphs to go through all the various levels of social understanding and perspective taking to fully grasp that sentence. I'm deeply skeptical that a person with severe autism (as she displays) would be capable of developing that kind of social understanding when 11 of her 14 years were spent not communicating at all.
4. For a bit I considered that she didn't have autism but rather just had severe sensory integration and she finally found a way to express it. This would go along with how she describes herself 'trapped' in a body. However, the video eludes to a number of events that suggested problems beyond sensory integration, no matter how severe. Smearing feces in the bathroom, for example, sounds a hell of a lot more like intellectual disability or some other disorder beyond sensory integration. If she has significant intellectual difficulties, I really can't expect she'd grasp the ideas OR use the words that are written.
Essentially, I'm trying to look at this from a variety of perspectives but I just can't find any explanation that connects her severely disabled 0-11 and her majestically articulate and socially intelligent 12-14.
She's not articulate at all, for what that's worth. You can see a few times when it does look like she is typing, and the spacing and syntax is pretty screwed, as well as spelling errors here and there, eg: "is hhe cute". No punctuation or capitalization, etc. I think the cuts where they had the highlighted, perfectly composed text being read by "Girl A" kind of throws the whole thing.
To be honest, my skepticism about this situation runs so deeply that I'd be very surprised if she could write 'is hhe cute'.
If she was not communicating until 11, her tutors were likely working on more functional skills and less expressive skills like building an adjective vocabulary, let alone understanding what those adjectives mean.
'is he cute' is the precisely correct response for that situation, but the situation was fairly ambiguous from a stimuli-perspective. I just feel like even that situation would require a greater degree of vocabulary, social skills, perspective-taking, and general social intelligence than I can reasonably see her attaining between 12-14.
Did she spend years 1-11 locked in an institution or something? If she were 'trapped in her body' as stated, surely she'd pick up an awful lot of things like vocabulary and moderate social context just from being around her family (including twin sister.)
You're using your autistic daughter to try and get on TV so that you can motivate other parents of handicapped children with false hope.
Even if the last bit is relatively well-intentioned... those ends do not justify those means.
Though this assumes that it is a hoax.
EDIT: The messages she's purported to have typed actually make her seem eloquent beyond her years; sure, I could probably have written that in the sixth or seventh grade too, but then I was also a genius, so there's that.
Only if she wasn't autistic. The whole point of the definition is to explain people who don't seem to pick up any of the standard social functioning. Not being able to communicate due to a nearly complete lack of social faculties means that things that people normally get through that sort of learning should just not be happening. You need to be interested in people in order to learn something from their patterns.
Right, but the entire premise of this is that (at least her) autism is being misunderstood (assuming that she's not suffering from something else in the first place), and that she is 'trapped in her body' as opposed to outright mentally deficient.
To say 'well an autistic girl couldn't do that because she's autistic' is a tautology. If she's trapped in her body but mentally rather capable, then the years 1-11 vs years 12-14 issue brought up by Cognisseur doesn't matter. She'd be learning the same way a regular kid would pick up on social context and vocabulary even if you insisted on teaching the child as though they were severely autistic.
I should point out that 75 years ago the treatment (by which I mean societies treatment of) and education of Down Syndrome sufferers was completely different --basically, non-existent. And because of that we had a completely flawed idea of just what people suffering from Down Syndrome were capable of doing or learning. Basically, we didn't bother. 75 years ago if you'd said 'you know, I bet if you took the time to teach them, people suffering from down syndrome would probably be able to cook meals in an oven, bathe, dress themselves, and functionally read' people would have said 'no they can't, because people with down syndrome can't do that.'
That's why I think it might be best to stay away from 'autistic people can't do that so she's not doing it because she's autistic' tautologies, and focus on how you'd actually go about objectively testing the girl to see how mentally present she is.
Yup, to clarify further that's what Cogni was talking about with the sensory integration thing I think.
They have objectively tested facilitated communication. It doesn't work. If it did work, you would be right that we would need to completely rethink what we know about autism. The fact is that it's been around for decades, and there have been many peer-reviewed scientific studies showing that the facilitator is, consciously or unconsciously, producing the perceived communication from the autistic child.
The truth is that all of the research supports our current understanding of autism.
I sincerely doubt this is 'legit' as well, I'm just pointing out that tautologies make poor arguments.
I think the point is that if she is indeed "trapped in her body" but still is very proficient socially, she is, by definition, not autistic. If we were to test her and find out that this story is accurate, the result would not be to throw out our entire definition of autism, but to find another diagnosis that matches her actual symptoms.
Well or to simply say "Oops, we screwed the pooch on diagnosing her as autistic. Our bad"
And... that would be good, I think? I mean, it sounds good in all ways. Much better than finding out in 75 years that 1% of severely autistic people actually had something else (we do diagnose far more people now that it's ASDs instead of autism) and were trapped inside their bodies while being treated inappropriately.
the "no true scotch man" fallacy.
Even if she has nothing related to autism nor intellectual disabilities this sort of learning seems impossible to me. But more importantly, from what they said in the video about her younger years, she definitely has more impairment than just 'trapped in a malfunctioning body with a totally intact mind'.
Her development simply isn't continuous in any way, and no matter how I tinker with the information (maybe she actually had diagnosis X, maybe the ideas are hers but the words are not, etc) I cannot come up with a plausible developmental pathway.
I don't know, I gues people do learn differently. I only learn well pretty much by observation. One of the reasons I don't cook since instructions don't really work with me.
I mean yes I learn from experience but I inevitably fuck things up 10 times before I come close to getting it right where as if I observe someone doing something I generally pick it up very quickly. The same goes for my social skills, I learned most of them by watching the interactions of others rather than actually interacting with others because I'm a total introvert but aside from being an introvert my social skills are fine.
Cogni is talking about something else though. This is equilavent to learning to fly or peform sugery by seeing someone else do it for 5 minutes. You can't understand why the pilot does what without trying and reasoning and getting to understand what the buttons do.
You learn by observation because you already have a vast amount of experience and data to understand what someone else is doing.
I just want to make sure I have this right:
You don't think that a mentally present human being able to observe the world around them would be able to gain understanding of a language that was spoken around them since birth, or social constructs they observed, simply because they were physically unable to participate?
Or are you just talking about the written language, as I find that much more of a barrier.
edit: Julius, the actual equivalent is learning to understand spoken english after ten years of listening to it and watching others respond to it, with part of your brain hardwired to pick up language.
Here is the problem.
She has shown clear signs that her brain is not correctly hard coded to notice and learn English.