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Merged facilitated communication/Carly's World (Autism)

Wow, UncaYimmy, thanks for posting the individual key hit screenshots and saving me the time.

Okay, so we've got two entirely separate things going on here:

  1. Is there enough evidence to support the overall claim?
  2. Does she appear to be actually entering the text in the video?

For the first, no, absolutely not, and Skeptic Ginger is correct in that one video doesn't prove anything. And like you said, the answer to why there aren't reams of videos and independent witness testimonies, etc, etc, is because, as you said, the family simply doesn't feel like it has to prove anything. If this is true (or even if it's not) they have watched this develop for years. Would we need some sort of independent, controlled environment to see if there is anything else to this claim? Absolutely, yes.

As for the second, I don't understand how this seems so complicated. As you pointed out, UncaYimmy, she very clearly hits all of the individual letters, and then picks from a generated list of auto-complete words. Is Skeptic Ginger's inability to see this just a lack of technical knowledge, or is her overly skeptical attitude influencing her perception of things.

I don't get it.

There's a difference between being skeptical and seeing conspiracies everywhere.
 
esoteric said:
Wow, UncaYimmy, thanks for posting the individual key hit screenshots and saving me the time.

Okay, so we've got two entirely separate things going on here:

  1. Is there enough evidence to support the overall claim?
  2. Does she appear to be actually entering the text in the video?

For the first, no, absolutely not, and Skeptic Ginger is correct in that one video doesn't prove anything. And like you said, the answer to why there aren't reams of videos and independent witness testimonies, etc, etc, is because, as you said, the family simply doesn't feel like it has to prove anything. If this is true (or even if it's not) they have watched this develop for years. Would we need some sort of independent, controlled environment to see if there is anything else to this claim? Absolutely, yes.

As for the second, I don't understand how this seems so complicated. As you pointed out, UncaYimmy, she very clearly hits all of the individual letters, and then picks from a generated list of auto-complete words. Is Skeptic Ginger's inability to see this just a lack of technical knowledge, or is her overly skeptical attitude influencing her perception of things.

I don't get it.

There's a difference between being skeptical and seeing conspiracies everywhere.
Click to expand...

The problem is, people suppose this is auto-complete. We can't see the screen due to glare. And it is quite difficult to see the keyboard. For a girl which communicate that often, one has to wonder why a poorly highlighted video is shown and not a better one.

By the way the auto-complete feature does not work that way on my PC, but that could be a version problem. if you try to auto complete a word with multiple entry , it ask for MORE letters to be entered, it does not give a list of auto complete and ask for a number to use whichever one. It could be a problem of different version, but I do not see the claim of using auto complete as demonstrated.

That said, after manipulating the video lightning I also see a F-O-R being type, I did not bother for the other letters too much hassle.

I don't mind being convinced by a better video, but this one isn't as convincing as it should be.
 
New video available

Hi
This is my first post, so if I have posted on a link that is too old, and that is uncool, or I make some other sort of etiquette error – forgive me, I’m a learner!

A new video is available showing Carly Fleischmann typing. I can’t post the link as I’m new on the forum, but it is easy to find.
Video is approx 11minutes, 30 secs long. Carly is actively typing for about 5minutes, 11 seconds of the video. During this time she types 24 words. An average of 12.95 seconds a word, almost 5 words a minute. I haven’t looked at all the key strokes – I can clearly see she types ‘pink’, but didn’t look at the other key strokes.

My concerns are these:
- This video looks to me like a typical ABA (Applied Behaviour Analysis) session, in that Carly makes a response (typing) and then is rewarded with a chip. It is quite understandable that Carly has been taught, via ABA to type in response to a stimulus (i.e. a known question) and is rewarded for this (with a chip). That is very different to spontaneously typing with your reward being communicating with ‘the world’ (I say world as Carly has a pretty big internet following), rather than a reward of a chip.
- And while the support person (I don’t know if he is a therapist) says ‘pop quiz’, their expressions and the rewards suggest these are familiar questions, with a known response. For example, when asked about what she likes doing in the summer, Carly types and the computer says “I love going to caves” – however, no reward, no one reacts – presumably as this is not the response that will receive a reward. It is apparent that the expected and rewardable response is “I love going to Cape Cod” and the mum and supporter are aware that the autosuggest program has got it a bit wrong, so they wait for the correct/rewardable response. So this suggests these are not really spontaneous responses, but that the questions are familiar and the responses are familiar. Consistent with ABA.
- Carly’s support person can be seen holding a chip in his hand, with his arms crossed, so the chip is away from Carly – I have also noted this in other videos of her typing (i.e.: a snippet can be seen in the 20/20 video). So I would guess that it is common for Carly to require a reward to type. This is completely consistent with an ABA approach – but once again – not spontaneous. I note in the new video that when typing the first statement “so what do I have to do to get a chip”, Carly looks to the support person for a reward at ‘a’ – however, you or I would have waited until we had finished the typing/sentence. Not sure if this suggests that she was performing the actions, rather than understanding the content/sentence. The support person doesn’t move his arms, so she goes back to typing – i.e.: the support person’s crossed arms may be a signal that the response isn’t enough to get a reward/chip (a bit Clever Hansish?)
- Given the speed of Carly’s typing – at least as displayed in the new video – one of her blog entries for Larry King, for example 31 Jan 2011 (634 words) would have taken about 2 hours, 16 minutes to type. Not impossible at all, just tiring for a young woman who is at school and tweets and is on facebook (Jan 31st may be in the school holidays - I don’t know) – my point is that 634 words sharing thoughts, is very different to typing a sentence for a chip.
- If capable of writing a blog, and tweeting – wouldn’t you just order a bag of chips on the internet and get them delivered! And I’d be pretty offended by having to ‘perform’ to get a snack.

I am concerned because, like FC, claims such as these related to Carly, can raise enormous hopes in parents of children with ASD. Given this, it is reasonable that Carly and her family allow double blind, independent assessment. They may wish for privacy, of course, but a double blind, independent assessment would appear to me to be no more invasive than posting 11minutes plus of video of your daughter typing.
 
Concerned, i know these forums are just a place for chatter and debate, but you are not furthering the understanding of autism and its treatment by spreading inaccurate depictions of ABA - the only data-backed means of teaching kids with autism. Also not totally sure why all this interest in portraying carly as a phoney? in fact, because she has been followed by some of the top medical and psychological professionals in Canada, she in fact HAS had blind studies done on her (in the form of developmental testing every few years by board certified, registered, Phd-holding psychologists). if you're really interested in autism, perhaps a better use of time could be made by reading up on more recent data on cognition among the non-verbal. INSAR/IMFAR are a wealth of knowledge. Posts like yours, which Carly sees from time to time, are hurtful to someone who has been second-guessed and challenged her whole life.
 
Thanks - give me a websearch heads up

Thanks for your reply autismadvocate
You indicate Carly has been independently assessed - that is reassuring, and very valuable. Can you please post some link details to a statement by one of the registered psychologists, or paediatricians, indicating the results? That would be really helpful.
thanks
concerned
 
response to Concerned

hi concerned. i dont know of any licensed doctor or psychologist who would post a patient's clinical reports. and of course we have hundreds of pages of these reports over the years. is there a specific proof point you think would quell the cynicism?

here's the only excerpt i'll post on the topic. i think in time, people will see a lot of cases like carly emerging. we have several friends with kids who are similar - although Carly's oral-motor apraxia preventing speech is an additional hurdle for her. this is short excerpt from an independent psychologist - as close to double blind as you can get in psych testing:

"Carly has been seen through this office since the age of 41/2
for a psychological assessments. At the time of the assessment,
it was felt that Carly was beginning to respond well to the Applied
Behavioral Analysis therapy that she was receiving. The
results indicated that Carly continued to present with Autism, a
mild to moderate developmental disability and as ever communication
disorder. In comparison, the results of her most recent
assessment at this office in April 2006 indicated average nonverbal
ability and receptive language skills. She also continued
to present with Autism and a Communication Disorder. The
current re-assessment is being completed in order to gain an
updated understanding of Carly’s progress to date and to assist
with educational program planning, to ensure that she has the
opportunity to learn to her fullest potential and manage behaviorally.
The assessment was completed over four sessions. The
Wechsler Intelligence Scale for Children—Fourth Edition was
used to assess Carly’s intellectual functioning. Carly’s abilities
within the area of visual perceptual reasoning were within the
Superior range (91%). These results were stronger in comparison
to her previous Average score. She displayed categorical
reasoning abilities within the Superior range (91%). Carly also
demonstrated Superior range ability to find missing essential
details in a picture (91 percentile). Overall, on the perceptual
reasoning domain of the WISC -IV, Carly’s performance was
within the Superior range and continues to highlight her strong
perceptual reasoning abilities despite her challenges. However,
it is very important to note that Carly’s behavior issues associated
with her Autism often interfered with testing and the
completion of each subtest often took a great deal of time.
The Peabody Individual Achievement Test—Revised was
used to evaluate current levels of achievement in the areas of
reading comprehension, spelling and general mathematics. On
the PIAT-R Carly demonstrated Very Superior reading comprehension
skills (98th percentile for age range 13 years, 1 month).
Her math problem solving skills for language based problems
were within the Superior range (95th percentile for age range
+18). She received a High Average score on tasks assessing her
Academic knowledge involving Science, Social Studies and Humanities,
equivalent to a 16 year, 11 month level.
Overall, Carly’s behavioral difficulties, such as withdrawal
behavior, social problems and atypical behavior continue to be
related to her Autism. . . .
 
Thanks for that info

Dear Autismadvocate
That information was really helpful, thanks! I think a lot of other people with an interest in this area will also find your post helpful - the scores you cite are very impressive! I think it is really helpful that you have posted them, as I think it is the kind of information that hasn't been provided in the past.
Thanks
concerned
 
Pantaz said:
I see lots of words, but no verifiable citations.
Click to expand...

This is a most valid point.

A cursory search via Google turns up nothing published academically about Carly.

I did find:

http://www.ncbi.nlm.nih.gov/pubmed?term="Walton-Allen N"[Author]

Am J Ment Retard. 1997 Jan;101(4):352-64.
Effects of maternal mental retardation and poverty on intellectual, academic, and behavioral status of school-age children.
Feldman MA, Walton-Allen N.
Source

Queen's University Kingston, Ontario, Canada.
Abstract

The impact of low maternal IQ and poverty was examined through comparison of 27 school-age children of mothers with mild mental retardation to 25 similarly impoverished children of mothers without mental retardation. The children whose mothers had mental retardation had lower IQs and academic achievement and more behavior problems. Not one child with a mother who had mental retardation was problem-free. Boys were affected more severely than were girls. Quality of the home environment and maternal social supports were lower in the group with maternal mental retardation; both measures were negatively correlated with child behavior disorders. Results suggest that being raised by a mother with mental retardation can have detrimental effects on child development that cannot be attributed to poverty alone.

PMID:
9017082 [PubMed - indexed for MEDLINE]
Click to expand...

The only publication on PubMed by one of Carly's prime supporters.

Let's see some proper scientific validation. After the fiasco of Facilitated Communication, skeptics are right to be skeptical.

If someone can point to such a study, I would be very interested to see it.
 
Thanks Pantaz

Thanks for your comment Pantaz - I appreciate it. Seems things are a bit stuck. I was hoping that the specifics posted would result in some more info/links/discussion coming forth, given this is the closest mention of specific assessment that I have seen on the web to date...thought it was a step towards details, but seems nothing further has emerged. I am guessing that professional citation is unlikely to be offered, that the posting provided is as close as it will get and is the end of the offering - given that Carly's experience has been 'on the net' since 2008, and still 'nothing published academically'. It is kind of surprising, given that we are looking at over 3 years of web activity - but I can understand that a professional would make no statement without consent. A speech pathologist is mentioned/is in some of the media items - a statement from them would be good. But things are stuck when the arguments provided are 'not a lab rat' and 'privacy' - the latter being hard to challenge, as I would not post my cognitive assessment results online - but then again, I don't make any claims about my IQ on line.
Thanks again
concerned
 
Thanks Gord

Thanks Gord - appreciate you looking to peer reviewed journals. I was not aware, from my web searching, that either Feldman or Walton-Allen were supporters of Carly, can you please post some info, re: which one is the supporter? I am interested in their statements and would like to search to follow up.
Thank you very much
concerned
 
Another miracle autistic child

This video was shared on Faceboook recently:

http://www.youtube.com/watch?feature=player_embedded&v=vNZVV4Ciccg#at=24

This doesn't appear to be a "facilitated communication" story, but still.. I'm skeptical.

Red flags:

1. It doesn't actually show her typing much of anything.

2. The typed passages it shows have perfect punctuation and capitalization...how does she do that when she types with one finger?

3. The texted conversation shown looks far more realistic than the "prepared" statements.

4. Her descriptions of autism look like they could come straight out of a psychology textbook.
 
I couldn't imagine her using terms like "so-called" and "put out the fire."

I also can't fathom her putting together those paragraphs together when she types at a rate of .5 WPM.

ETA: I wouldn't get through half of a sentence before having to re-read what I typed to remember what I was saying.
 
aggle-rithm said:
1. It doesn't actually show her typing much of anything.
Click to expand...

Towards the end the guy asks her a question, she types one letter, then it cuts to the long drawn out answer on a computer screen that isn't the same as what she was using.
 
The video doesn't really show any details other than a finger pressing one key at a time. The bits she types don't match up with the sentences later read or displayed.

Without more information, there's no reason to assume it isn't FC.
 
DallasDad said:
The video doesn't really show any details other than a finger pressing one key at a time. The bits she types don't match up with the sentences later read or displayed.

Without more information, there's no reason to assume it isn't FC.
Click to expand...

And on top of that, when the reporter wanted to communicate, she sat there for hours not typing anything, and then after he mentions his son, she asks "is hhe cute"

All of the footage they have, and no where she is really motivated to type anything, and yet there are all of these paragraphs of deep insight and intelligence.
 
I don't know whether she is typing it all or not, but I am inclined to think the prepared statements are edited from what she originally typed. Maybe her parents edited it (where some wishful thinking could very plausibly affect it), or maybe Carly edited it herself. Some degree of OCD-like behavior is common with ASD, so even someone who takes hours to type a little bit may feel compelled to edit it painstakingly.

My autism is high-functioning, and unlike Carly I spoke reasonably on time and didn't have other significant developmental delays. I read on time and was recognized as fairly bright from early on. However, there have always been times when sensory overload made it impossible to speak, and I have responded to sensory stressors in very similar ways to what the video recorded Carly behaving, resulting in strangers who didn't know me to assume many times I was mentally retarded (and my IQ was documented in the gifted range by a professional, so I can see how someone with average or below average intelligence would come across as having more severe intellectual impairments than is the case to even a professional). Her descriptions of what it's like to be autistic sound very much like things I wrote when I was in elementary school, before I even got diagnosed and before I ever saw a DSM (or had the Internet access).

There was a thread awhile back about a small clip where people were trying to determine whether she was typing the messages. This clip has much more video of her actually typing than the other one. I think it is genuine, but could easily be mistaken. I do want to caution, though, that judgments should be made on the evidence that she is or isn't typing independently, and to remind that autistic people frequently have a wide scatter in performance on subtests of IQ tests compared to non-autistic people (whatever their score on IQ tests). IOW, it's common for an autistic person to be very good at narrow skills A, B, and C while very bad at narrow skills D, E, and F, and maybe average at G, H, I (not necessarily in those proportions). Which is why from my subjective perspective it is intuitively makes sense that 1 in 10 autistic people would be savants as well, even with significant disability in other aspects of cognition.
 
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