Aspies For Freedom

I better like the idea of FC because it doesn't express this lack of acceptance towards autism as chelation does, not that it makes it real immediatly ofcourse.

Amanda Baggs says Facilitated Communcation can help someone communicate in some cases, while she acknowledge that it is sometimes just the therapist writing. There are apparently methods to prove whether it is the patient writing.

Apparently one of those who got Facilitated Communcation and typed allegations, later learnt to type independently, which made the one the allegations where raised against admit the abuse immediatly.

This used to happen with language translators until the courts started using certified translators.  People would bring in a neighbour or relative to court to translate and they would not translate properly.  They would just tell the judge and lawyers what would help the person and not translate word for word.  

Some of the aides might just want to show that they were helping the students make progress.  The aides maybe want to make themselves look good like teachers who teach only to have their students score high on standardized tests and not really learn what is important, useful or interesting to the students.

I find the idea that a 10-year-old with cerebral palsy must have lower intellectual skills than any other 10-year-old very strange indeed.

The problem with facilitated communication is that the term encompasses several different ways of assisting people to communicate, some of which are valid (I've used them, even my cat can do some of them for me) and some of which are not.

I like your ideas.

FC doesn't have to require literacy by the way.  People can use it to point to things other than letters.  And some people learn to write before they learn to read, weird as that may sound (similarly to how some people, like me, learn to speak before learning to understand language).

Also I think Soma Mukhopadhyay has done something where she's had people who normally would use FC, instead point at extremely large letters that are easy for them to point at because of the size, but that are so large that they'd be impractical on a keyboard.

Is that some form of echololia?

erkolos:  Yes, in a way.  I learned to repeat things, and even put them into patterns that people seemed to want, before knowing what any of the words meant.

Imagine learning the mechanics of a foreign language and being able to speak it plausibly to others, but not having any clue what you are saying.  Then add in not having any clue that saying things means something particular.

Then after a long time of exposure the patterns start making more and more sense.

I once measured my vocabulary using a dictionary and some instructions on how to estimate vocabulary size, both receptive and expressive.  It said that everyone has better understanding of language than use of language.  In my case, even then, and even in writing which is my best way of doing it, I only understood 4/5 of the words I could and did write regularly.  I also tested in childhood as having receptive language as one of my lowest scores and expressive among the highest.

This is a common pattern among hyperlexics, if anyone's curious.

I think I'm abit familiar with similar from my own experience.

It's those few words in german that doesn't really mean anything, but the message still gets wrong if you leave them out.

I'll also give an example of one kind of assistance I have gotten that some people would label 'facilitated communication' although the person was not formally trained in it.

I have a movement disorder that causes me to sometimes go rigid and also sometimes have involuntary resistance to movement.

This had happened, combined with a bad migraine and overload, in a weird way at a conference, where half of my body went limp and the other half went rigid.  

I was able after a little while to bang on my keyboard to indicate a desire to communicate, but was not able to make all the switches in movement direction and such to do it.  I could get up and down but then not side to side at the same time.

A friend spontaneously assessed the situation, and decided to see what would happen if she supported my arm a bit.  She grabbed and pulled a little.  Then muttered some sort of astonished interjection or another, because of how hard my arm was resisting her.  So she pulled up and backwards a lot until my arm was sitting still in the air rather than going downward involuntarily.

At that point, because I did not have to fight my arm's attempt to press down as hard as it could, I could move forward and back, and right and left, quite easily.  

Then if I wanted to push down, she could phyiscally feel the change from my involuntary level of resistance, to a voluntary pushing down.  And she could let up a bit of her resistance at that point to make it easier for me to press down.  Then she could immediately pull back up so I wasn't hitting the same key so many times.

She was shocked and somewhat outraged to see this described later as "facilitation", because she has no training in FC and is not particularly a proponent of FC.  She was just a friend vaguely familiar with my movement disorder, doing what it took in the moment to figure out what to do.

She also was unfamiliar with the fact that a lot of what looks like "guiding the hand" in "FC" is actually similar to what she was doing:  Pushing backwards against the arm or hand.

So that's just one example of how something that at least looks like FC can work, without being someone guiding the hand.

Some people might need some type of modified bliss board instead of a computer keyboard.  I met a woman who used a bliss board and she had an aide who would translate into speech what she was saying.  You have to wonder at the accuracy of the translation.  I would have liked to just speech bliss board directly to this person rather than having someone in the middle of the conversation all the time.  I feel bad, like I was ignoring the translator or treating them like a non-person.  I suppose some people treat people who use bliss boards like non-people as well.  People will talk over my friend who has cerebral palsy like she does not have a mind in her head and she can talk.  It is not too difficult to understand her but people would direct their conversation at me.  I would tell them,  She can talk and understand everything you say.  

Where can I learn bliss symbols?

Bilsssymbolics Resources

I heard that at one Autreat there was a presentation by a woman with cerebral palsy who was using another person to translate her speech.

The problem was, there were several people in the audience who could understand the speech of someone with severe CP.

And they started going "Hang on, that's not what she's saying at all!"

It became a real problem.  The non-disabled woman was "translating" by saying something entirely different than what the woman with CP was saying.

And that was in speech.

I just read it, and it doesn't sound too out of line for a 10-year-old to me, especially a 10-year-old who loves reading as much as she does.

I can remember typing out poems when I was 12, that when a friend of mine showed it to an adult she knew, the adult said that a 12-year-old could not write with that level of abstraction.  I did not always even consciously understand the meaning of what I wrote, I just put it together without thinking.

That same friend talked of giving assignments to teachers at school, and having them handed back with "In your own words, please" scrawled all over them, even if they were her own words.

My father was once accused of cheating for doing well in a particular class.

I know enough people that things like this have happened to, that I think that children are just flat underestimated, and when children do something beyond what is expected, people just assume the children couldn't "really" do it.

And even if there's some category of "gifted" children in those areas, there's nothing about CP that means a person can't also fall into that category.

tenaciouscj:  You probably just don't know a lot about certain movement disorders that occur in autism:

this page describes it in terms of catatonia (which is an old neurological term that psychiatry unfairly hijacked) briefly (including "apparently motiveless resistance to instructions or attempts to be moved").  Some degree of this occurs in roughly 12% of autistic people found in at least one study.  

When I freeze complete as opposed to partially... I'll just say that one time I did so while sitting in a chair, and someone picked me up by my arms, and the rest of my body remained in the exact position as if I was seated in the chair, all the way from being carried into another room and put onto my back.  I had to be forcibly pried out of that position.

Another link about some of this is this one.

There are a lot of technologies that can work, but don't tend to be available.  I know of one person who used FC for a long time and only when he got ALS was he allowed to get a device that allowed eye gaze to be used for communication, and he was finally able to type independently with his eyes.  Most people who use FC, even if they could benefit from such a device, are not allowed one due to costs and stereotypes about who would need one.

For people with cerebral palsy... I heard there was a gigantic machine that was used by the woman who first used FC, and that would allow her to type independently, but it was bulky and impractical to use in everyday situations.

I really in a way resent having someone providing this kind of assistance compared to a ouija board by the way.  She was pushing up away from the keyboard against that "motiveless resistance" that my arm was putting out, and then when she finally broke through that, I was able to make the other movements.  I don't understand how that is in any way like pushing against a piece of plastic and allowing unconscious movements of one's own to move it.

What I was told when I asked some people who were very adept at technology about a technological way of accomplishing the same thing, was that the technology would have to be extraordinarily complex in order to differentiate between involuntary pushing down and voluntary, in the way that a human could, and to adapt to the constantly changing situation with regards to movement.

(Because for instance if I freeze or am close to freezing, my arm might, at any given time, (a) resist movement with equal force until overpowered, (b) move extremely easily, or © do something relatively similar to the lid of one of those boxes where you push it and it moves the way you push it and then jumps the opposite direction.  A machine would have to be capable of recognizing and compensating for all of those situations, while at the same time recognizing when a movement is voluntary rather than involuntary and responding to that movement differently.)

By the way, the use of touch to unfreeze people with Parkinson's and similar movement disorders (and autistic catatonia falls into the same family as that, while not being the same thing, just as it is similar to ordinary catatonia but not exactly the same either) is incredibly uncontroversial.  They even train dogs to do it.  My cat can do it.

At any rate, yes there is technology that is useful for some but not all people.  And I haven't got into all the things that can get called FC, just some of them.

The main thing that gets difficult with some of the access techniques, is that you have to find something the person has reliable voluntary movement in.  In someone who's paralyzed on one part of their body and not another it's simple.  In someone who has a lesser problem than paralysis (like problems with initiating movement in general, or problems with motor planning) but is spread out over their entire body, it can be a lot trickier, especially if the area that they can control best moves, or if there are counterindications for using it.  

(That's why I have something that works on eyebrow movements and lateral eye movements for those times -- those are both my more reliable movements and free of troublesome joints.  And since I have the lax joints that seem to go with autism, I'm more prone to developing repetitive strain injury than most people on any joint I use.  That's another reason these eyebrow/eye things are also marketed towards people with RSI, they don't require joints.)

Things can get remarkably tricky remarkably fast when you're dealing either with multiple conditions at once or with something that's not particularly straightforward (like "paralyzed here but not there" is straightforward, as opposed to "problems with voluntary movement and/or proprioception that become more severe under overload or other stress and that can manifest in any of several ways at any given time, including all kinds of involuntary movements and reactions", which is what you're more likely to see in an autistic person).

I also hear that a lot of what the Mukhopadhyays are doing is a technique that resembles some things that have been called FC (although they stress the difference), but seems to have a greater rate of independent typing and/or handwriting than traditional FC does.

By the way an interesting thing (to me anyway) about the incident I described earlier where my friend grabbed my arm, is that I was totally unaware that my arm was resisting her movement of it, especially with that much force.  The resistance was not only involuntary, but impossible for me to discern as it was happening except by her reactions to me and my questioning of her later on.  I don't always have the best body sense, but that was ridiculous.

Lisa Jo Rudy wrote a piece on FC some time ago:

http://glclk.about.com/?zi=8/56Kp

This part was something I found cleared some stuff up abit: