Merged facilitated communication/Carly's World (Autism)

SRW

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SRW
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http://abcnews.go.com/Health/story?id=4311223&page=1

ABC news the people who brought you Jon of God are now touting Carly Fleischmann's ability to type her feelings about her experiences.

Haven't we seen this before? As I recall facilitated communication has been throughly debunked.

Or is this something else? from the little bit of actual typing she does on camera It is hard to know if she is really typing or picking up clues from the people sitting around her.

Anyone know any more about this or the therapist?
 
I don't know much about this case, but it didn't look like your classic facilitated communication. It looked like she was typing by herself, not having her hand guided by someone else. Unless there is some sort of physical contact or verbal encouragement when she moves towards certain letters, I don't think it is really facilitated communication/ideomotor effect.

It may just be that her autism caused her to have difficulty with direct communication, but somehow using the computer as an interface feels less frightening?

But then again, there doesn't seem to be enough to properly tell in that video.
 
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Here's a link to another skeptic forum discussing it.

http://www.skepchick.org/skepticsguide/viewtopic.php?p=188057&sid=e0b295efdf84d1c2bcdc78462acafeb5

And in my brief googling, I found that the parents are saying that they never used facilitated communication with her even in the beginning to teach her how to type. Supposedly she started with something called a Dynavox which has pictures and symbols and gradually progressed to a laptop.

I would be interested to see whether when she makes spelling mistakes, they are similar mistake to those her carers make, and also whether she ever does it without someone right by her side.

Edit, found something from the mother claiming that she sometimes types in a seperate room, but usually needs someone with her as she is easily distracted.

Edit 2: Also found that she suffers from oral motor apraxia which limits her ability to use speech. Maybe she has always had good language skills, and was only limited by her speech poblems. But then, did they try sign language? I think I would have to have an awful lot more information on this to be able to make any sort of judgement.
 
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I had no great problem with the piece I saw on ABC news about Carly Fleischmann.

She is not as unusual as Donna Williams an autistic who wrote her autobiography called, Nobody Nowhere at 29. Donna did not speak "naturally" but was so smart that as an adult she figured out that the noises people made were some form of communication and taught herself how to speak (she first practiced making sounds -- "buh", "baa", "bah", etc, etc).

She wrote the book to find out, as she said, "what kind of 'mad' I am".

I heard the interview she had with the late lamented Peter Gzowski when it first aired in 1993. The interview reduced me to tears, it reduced Gzowski to tears, the production staff in the studio to tears, and a few hundred thousand CBC Radio listeners to tears as she struggled to translate her inner thoughts into spoken words.

I can't find the interview on the web any more but http://www.abilities.ca/agc/article/article.php?pid=&cid=&subid=513&aid=186
has a good summary of Donna's story. (Just ignore the phrase "Elimination of troublesome foods, vitamin supplementation". :))

She has her own website at:
http://www.donnawilliams.net/
 
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It doesn't look like any FC puppeteering I've seen, but I'd like to see more clips. Any links?
 
I could not find any other clips. I am leaning towards this being something
completely different. I am hoping it is real and this young lady is really finding her voice. However, what I have seen so far does not convince me. Watching her eyes when she is "typing" just does not look authentic. The discussion over at SGU has someone claiming to be Carly's Mom. And she is answering some of the skeptical questions.
 
At work, my actual job title is "Communication Facilitator". I am hired through agencies, families, and private individuals to help adults with developmental disabilities who are unable to speak or use traditional sign language (A.S.L. mainly) find alternate ways of communicating. Where I live, I have recently seen a big trend toward "Facilitated Communication" in different forms.

I would like to clarify that I am very much against FC and work hard to prevent the people I work for from becoming involved in it. I live in Canada, and most of my colleagues I have asked are not familiar with term "facilitated communication" and the surrounding controversies, however many of them are (maybe unknowingly?) participating in it.

The wikipedia article RSLancastr refers to seemed somewhat vague as to examples of types of augmentative communication deemed to be within the realm of FC. The article focused on typing, but the majority of FC I've seen has been using 'adapted sign language' and electronic speech-generating devices, such as Dynavox or Vanguard (google "Aroga", first result, for examples of some of these devices). FC is difficult to stop or slow down where I am, the majority of companies that provide augmentative communication support are non-profit, government-funded, and are chronically short-staffed. Being government-funded, agencies pay the equivalent to (or less than) the hourly wage the counter staff at "Tim Horton's" (very popular chain of Canadian coffee/doughnut shops) make. I see many many untrained staff step into these jobs with no related experience, only the desire to 'do good' (a good intention to have but clearly not enough all the time...). I know many people who went to university to become Speech Language Pathologists, etc. but don't seek jobs in the developmental disabilities community due to the very low pay and little incentives to follow a career path in that community. It is truly tragic! I have seen so many disabled individuals hurt by FC, but it continues to become more and more common here.
 
Oops... I should have clarified when I wrote "The wikipedia article RSLancastr refers to.."
I was referring to a post he made on the thread "Facilitaded Communication gets local press coverage" that links to a Wikipedia entry on Facilitated Communication. :)
 
The Canadian newsmagazine W5 is doing a story on this as well on Saturday. They did do a very skeptical story on the Canadian Cancer Research Group, so I'm hoping if there is some sort of fraud involved that it will not be a puff piece.

Full video tends to show up on the site rather quickly, usually after the show has aired in the Maritimes, so you should be able to see it.

http://www.ctv.ca/wfive
 
Carly Fleischmann and the autism assisted software?

here is a link with some info on this, it looks like the TVshow aired recently...
http://discuss.ctv.ca/forums/showthread.php?t=11490

It appears that the SOFTWARE creates words based on some basic typing?
Has this been verified by credible testing?
Is this really happening, or is it some software that creates words from a few letters, and then more words from the context of the previous words?
Are the sentences being created by the software itself?

It would be easy to find out, try it without that software!
Did they actually air this TV show, without looking into this software?
Maybe someone could download the software trial called WordQ, and just type in random letters, and see if it creates sentences?
Is this the same WordQ.

It would be tragic if this was some type of software doing this.

It appears Carly's mother is posting here?
http://www.skepchick.org/skepticsguide/viewtopic.php?p=189832&sid=6a974f16c112d8d231af71dfe120ba46
 
Carly's World (Autism)

I stumbled upon this recently.

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

It's a video about a girl named Carly who never spoke until she discovered a computer. I want to believe it, but wondered what you guys think. I don't see how a person who never read or wrote or spoke before, suddenly knew how to type and spell correctly on a computer, and know to simplify words like "stim" for stimulation.

She has a website (carlysvoice.com), where she says she herself is typing, but the link to her actually doing it isn't very convincing.

I confess I did not delve too deeply into the site. I'd love to have my skepticism proven wrong on this.
 
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Didn't look at the site but looked for related links and there seems to be quite a few connections to well known autism charities and groups and a couple of articles about her by professionals in the field and nothing obviously suggesting a fake.

The human mind can be very strange and those with severe autism are frequently beyond easy comprehension. The fact that she didn't write or speak for years doesn't mean that she wasn't learning how to all that time, from the little bit I read she could understand other people (though not always responding in any way) so she must have been picking up language skills but hadn't found a way to use them. Then she did.
Shrug, can't say much else without researching it more but sounds plausible, strange of course but then so much is :D
 
Here's some statements by her mom on carly's background. She states she did not suddenly learn to do this, her family has been working with her since she was a small child to get her to this point. I think that is where the confusion lies. The news program I think wanted to make it seem more "miraculous" to make it more exciting, so they presented the story in such a way where it seems like one day this girl just sat down at a laptop out of the blue and could do this. But the way the parents tell it...yes it was only recently that she was able to communicate to this degree, which surprised them, but they have spent the last 9 years trying to teach her how to do so.

“Hello everyone --this is Tammy, Carly's mom …. What Carly is doing is not, and has never been FC or facilitate communication. What she has learned to do has been the result of years and years of effort, starting with a Dynavox machine, moving to a Springboard and then a lightwriter. She just prefers the laptop because it makes her look like everyone else who has a laptop. Even before the Dynavox, we had binders and binders of laminated sheets with Mayer Johnson picture symbols on them and the words below. We have always gone under the assumption that she was understanding and since she was so good at navigating her communication binders, we knew she was heading in the right direction from early on --we just never knew it would lead to such a sophisticated level of output. For the record, we may be sitting beside her when she types, or she sometimes kicks us out of the room when she wants to be alone, but we NEVER guide her hand over the letters --what would be the point of that? FC was debunked years ago. Independence for Carly has always been the goal in everything she does, from getting dressed to feeding herself to communicating to us. I hope that clears up any confusion.”

"When she was 2, we starting with PECS --did picture exchanges for every imaginable item under the sun. Many of the games I bought her had to do with reasoning and logic and were highly visualy in nature - memory games, sequencing, matching -- these were with pictures, words, numbers, etc. We had visual schedules (with the words underneath) for everything she had to do --gettng dressed, using the bathroom, tidying up, meals, going outside, etc. The whole house was also labelled -- my son went crazy with the label maker. Every item was stickered. We then moved to communication binders --we started that by category --food, acitivities, clothes, weather, feelings, etc. She never got to do what she wanted until she used the communication binders to show us. These were laminated sheets we made up with the mayer johnson picture symbols in them as well. We kept that going for a long time and all this time her ABA programs were also teaching her how to spell and read. We created stories for her using the mayer johnson software and didn't just read them to her --she was looking at the pages as well.We kept the binders for ease of use and portability but we were also learning about augmentative communication devices since it was clear her apraxia was so severe. We also taught her some sign language but realized that while we understood the signs, most of the world did not and so that was not going be to a functional option for her. The first machine was a Dynavox, the second was a Springboard and the third was a lightwriter which we used in conjunction with her laptop. We thought she would like the lightwriter better but she preferred the laptop even though it is more cumbersome --but it is what other kids have and that is a concern to …. Hope that helps.”


Hearing it explained this way I think makes it seem much more probable.
 
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"When she was 2, we starting with PECS --did picture exchanges for every imaginable item under the sun. Many of the games I bought her had to do with reasoning and logic and were highly visualy in nature - memory games, sequencing, matching -- these were with pictures, words, numbers, etc. We had visual schedules (with the words underneath) for everything she had to do --gettng dressed, using the bathroom, tidying up, meals, going outside, etc. The whole house was also labelled -- my son went crazy with the label maker. Every item was stickered. We then moved to communication binders --we started that by category --food, acitivities, clothes, weather, feelings, etc. She never got to do what she wanted until she used the communication binders to show us. These were laminated sheets we made up with the mayer johnson picture symbols in them as well. We kept that going for a long time and all this time her ABA programs were also teaching her how to spell and read. We created stories for her using the mayer johnson software and didn't just read them to her --she was looking at the pages as well.We kept the binders for ease of use and portability but we were also learning about augmentative communication devices since it was clear her apraxia was so severe. We also taught her some sign language but realized that while we understood the signs, most of the world did not and so that was not going be to a functional option for her. The first machine was a Dynavox, the second was a Springboard and the third was a lightwriter which we used in conjunction with her laptop. We thought she would like the lightwriter better but she preferred the laptop even though it is more cumbersome --but it is what other kids have and that is a concern to …. Hope that helps.”
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This sounds like pretty typical speech therapy/AAC progression for a non-verbal child -- autistic or otherwise (though the visual schedules are more typical of autism therapy than other conditions). One thing worth noting is the mention of severe apraxia. I'm not sure of the statistics, but a significant number of kids with autism also suffer from some degree of apraxia. Whether it occurs as part of an autistic profile or not, apraxia takes a very long time to treat, and kids with more severe cases may never speak normally -- or at all. Which is one reason portable voice synthesizers are such a wonderful invention (they have multiple AAC systems available as iPhone apps now!:)).

If it really happened the way the mom described, I find that credible.

I'll have to look at this more in-depth ... there are some families I work with who might like to see it, if it's on the level.
 
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But this doesn't jive with the favor expressing regret that they used to speak in front of her as if she wasn't in the room. It doesn't jive with his comments that he seemed to suddenly realize there was a person in there. It doesn't jive with the therapists needing to be convinced. Most striking, though, is that there is no actual video where we can see her typing anything coherent.

I remain unconvinced and feel a little dirty because of it.
 
All we ever see in the film is a child hitting a single key. We never see her actually enter complete sentences or communication except,"is he cute", with a typo. Without actually seeing her enter the keystrokes, I would wager this is a fraud. It is intriguing. But the rest of what we see is not her typing, but the girl hitting a single keystroke which repeats aloud an already entered passage. If the girl had really typed the passages, it shouldn't be that hard to videotape.

It's possible the parents are wishfully believing in facilitated communication. I don't see the evidence here of the words coming from the girl, only evidence of a hoodwinked John Stossel. That probably isn't hard to do. ;)
 
Skeptic Ginger said:
But the rest of what we see is not her typing, but the girl hitting a single keystroke which repeats aloud an already entered passage. If the girl had really typed the passages, it shouldn't be that hard to videotape.
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From one video linked on the site, it looks as if she types very slowly. I've seen people with other severe disabilities using AAC devices who, whenever possible, prep what they want to say in advance because it takes them so long to get it out if they have to type it while you're sitting there waiting. I believe Stephen Hawking works that way sometimes. Not that there isn't room for skepticism here, but I don't think it's all that significant that the news clips didn't show the girl typing out her message if she types as slowly as she did in the video linked on the site. These segments are time limited, after all.

I realized as I was looking through the site that this is the same girl the local news did a piece on a few years ago, and I remember going through all of these same questions in my head back then. Of course, I didn't bother looking into it in any detail then, and eventually I forgot about it. :S
 
Skeptic Ginger said:
All we ever see in the film is a child hitting a single key. We never see her actually enter complete sentences or communication except,"is he cute", with a typo. Without actually seeing her enter the keystrokes, I would wager this is a fraud. It is intriguing. But the rest of what we see is not her typing, but the girl hitting a single keystroke which repeats aloud an already entered passage. If the girl had really typed the passages, it shouldn't be that hard to videotape.

It's possible the parents are wishfully believing in facilitated communication. I don't see the evidence here of the words coming from the girl, only evidence of a hoodwinked John Stossel. That probably isn't hard to do. ;)
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Here you go:


I've met autistic people online who are completely non-verbal in real life, but when they type a message on a computer they're more articulate then I am. One of them mentioned that it's easier to communicate via a computer because it takes the social pressure away -- she finds it easier to interact with a machine than with people. She also said that it takes hours for her to make a forum post.

Others have said that using the computer gives them time to think about what they want to say. When they try to talk directly to people (those who can speak, of course) they have trouble keeping up with the conversation -- it takes more time for their brains to process all the input and then formulate an answer.
 
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