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Re: [AutismFC] Re: 14 year-old today in the United States being described as "noncommunicative

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  • Char Brandl
    Art, Well, it might be foolish on my part to jump in like this, but I have now sent the following comment to Dr. Novella s blog: It s always dangerous to just
    Message 1 of 13 , Mar 26, 2008
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      Art,
      Well, it might be foolish on my part to jump in like this, but I have now sent the following comment to Dr. Novella's blog:
       
          It's always dangerous to just drop in on an ongoing discussion, especially since I haven't read all the comments, and will not be able to stick around to keep the conversation going.  But I think I can help with the concern about "noncommunicative" - at least a little.
      I was a special educator for many years, now retired.  Most of my students would have carried a similar label, and we thought they were severely cognitively impaired.  But the truth is that all sentient beings communicate in some way - even if it is all done through behavior, with no words spoken. 
      And we were so very wrong about their cognitive level.  They were unable to use spoken language to communicate their thoughts, but once we found a way to break through this barrier we began to see that they were learning all the time - and so much more intelligent than we had ever imagined.
      I used, and continue to use, Facilitated Communication.  Properly used, it is valid and real, and unless you have actually participated in a facilitated conversation, at least as an observer with an open mind, I don't think anyone has the right to imply that Art and I and others in our position are lying about our experiences.  The young people I work with have to deal with attitudes like that all the time, and they deserve better.
      Anne Donnellan has long advocated for going with the "Least Dangerous Assumption."  In cases like this, I think it's dangerous to assume anyone is cognitively impaired to the extent that they are unable to communicate.
       
      Hope it helps. 
      Char

      Arthur Golden <golden@...> wrote:
      Dr. Novella finally responded with the following but I am ready to go
      to bed - any ideas of how to reply from the rest of this autismfc
      list would be appreciated:

      Steven Novella on 26 Mar 2008 at 2:50 pm EDT:

      "Let me make my position clear - FC is complete bunk. I think
      whenever a facilitator is in the loop, the communication is called
      into question - unless the facilitator is completely blinded to the
      questions/informati on. Simply minimizing "influence" is insufficient.

      Regarding "noncommunicative" I am not sure why you are harping on
      this term. This is commonly used to describe someone who is
      cognitively impaired so that they are unable to meaningfully
      communicate. To deny that such individuals exist is to be in denial."

      My original post accessed at:
      http://health. groups.yahoo. com/group/ autismfc/ message/1560

      .



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    • Arthur Golden
      Char, Your comment sent to Dr. Novella s blog is excellent but he has not yet allowed it to be publicly displayed after 5 hours and I doubt that anything will
      Message 2 of 13 , Mar 26, 2008
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        Char,

        Your comment sent to Dr. Novella's blog is excellent but he has not
        yet allowed it to be publicly displayed after 5 hours and I doubt
        that anything will penetrate his closed mind.

        However, I find your wisdom to be very well stated and I ask your
        permission to share it with parents of children viewed
        as "noncommunicative" by the professionals, including teachers. If I
        can find an open mind, then your words can penetrate.

        Later this morning (my time) I plan to send you a pdf file of an
        article from a news magazine here in Israel about a 14 year-old being
        described as "noncommunicative" - a situation that today does happen
        here in Israel even though it should not happen today in the United
        States. The article was written anonymously but I will try to locate
        the author and therefore the 14 year-old and try to offer to help,
        giving out your words of wisdom.

        Art

        --- In autismfc@yahoogroups.com, Char Brandl <charbfc@...> wrote:
        >
        > Art,
        > Well, it might be foolish on my part to jump in like this, but I
        have now sent the following comment to Dr. Novella's blog:
        >
        > It's always dangerous to just drop in on an ongoing
        discussion, especially since I haven't read all the comments, and
        will not be able to stick around to keep the conversation going. But
        I think I can help with the concern about "noncommunicative" - at
        least a little.
        > I was a special educator for many years, now retired. Most of my
        students would have carried a similar label, and we thought they were
        severely cognitively impaired. But the truth is that all sentient
        beings communicate in some way - even if it is all done through
        behavior, with no words spoken.
        > And we were so very wrong about their cognitive level. They were
        unable to use spoken language to communicate their thoughts, but once
        we found a way to break through this barrier we began to see that
        they were learning all the time - and so much more intelligent than
        we had ever imagined.
        > I used, and continue to use, Facilitated Communication. Properly
        used, it is valid and real, and unless you have actually participated
        in a facilitated conversation, at least as an observer with an open
        mind, I don't think anyone has the right to imply that Art and I and
        others in our position are lying about our experiences. The young
        people I work with have to deal with attitudes like that all the
        time, and they deserve better.
        > Anne Donnellan has long advocated for going with the "Least
        Dangerous Assumption." In cases like this, I think it's dangerous to
        assume anyone is cognitively impaired to the extent that they are
        unable to communicate.
        >
        > Hope it helps.
        > Char
        >
        [snip] Original message can be accessed at:
        http://health.groups.yahoo.com/group/autismfc/message/1571
      • Char Brandl
        Art, Yes, please feel free to share my comments with anyone who might be interested. I am always hoping to be able to help. Char Arthur Golden
        Message 3 of 13 , Mar 26, 2008
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          Art,
          Yes, please feel free to share my comments with anyone who might be interested.  I am always hoping to be able to help.

          Char

          Arthur Golden <golden@...> wrote:
          Char,

          Your comment sent to Dr. Novella's blog is excellent but he has not
          yet allowed it to be publicly displayed after 5 hours and I doubt
          that anything will penetrate his closed mind.

          However, I find your wisdom to be very well stated and I ask your
          permission to share it with parents of children viewed
          as "noncommunicative" by the professionals, including teachers. If I
          can find an open mind, then your words can penetrate.

          Later this morning (my time) I plan to send you a pdf file of an
          article from a news magazine here in Israel about a 14 year-old being
          described as "noncommunicative" - a situation that today does happen
          here in Israel even though it should not happen today in the United
          States. The article was written anonymously but I will try to locate
          the author and therefore the 14 year-old and try to offer to help,
          giving out your words of wisdom.

          Art

          --- In autismfc@yahoogroup s.com, Char Brandl <charbfc@... > wrote:
          >
          > Art,
          > Well, it might be foolish on my part to jump in like this, but I
          have now sent the following comment to Dr. Novella's blog:
          >
          > It's always dangerous to just drop in on an ongoing
          discussion, especially since I haven't read all the comments, and
          will not be able to stick around to keep the conversation going. But
          I think I can help with the concern about "noncommunicative" - at
          least a little.
          > I was a special educator for many years, now retired. Most of my
          students would have carried a similar label, and we thought they were
          severely cognitively impaired. But the truth is that all sentient
          beings communicate in some way - even if it is all done through
          behavior, with no words spoken.
          > And we were so very wrong about their cognitive level. They were
          unable to use spoken language to communicate their thoughts, but once
          we found a way to break through this barrier we began to see that
          they were learning all the time - and so much more intelligent than
          we had ever imagined.
          > I used, and continue to use, Facilitated Communication. Properly
          used, it is valid and real, and unless you have actually participated
          in a facilitated conversation, at least as an observer with an open
          mind, I don't think anyone has the right to imply that Art and I and
          others in our position are lying about our experiences. The young
          people I work with have to deal with attitudes like that all the
          time, and they deserve better.
          > Anne Donnellan has long advocated for going with the "Least
          Dangerous Assumption." In cases like this, I think it's dangerous to
          assume anyone is cognitively impaired to the extent that they are
          unable to communicate.
          >
          > Hope it helps.
          > Char
          >
          [snip] Original message can be accessed at:
          http://health. groups.yahoo. com/group/ autismfc/ message/1571



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        • Arthur Golden
          I just tried to make the following entry to Dr. Novella s blog and it was not accepted. So I am posting it here: Dear Dr. Novella, 1. Since I am not
          Message 4 of 13 , Mar 27, 2008
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            I just tried to make the following entry to Dr. Novella's blog and it
            was not accepted. So I am posting it here:

            Dear Dr. Novella,

            1. Since I am not ideologically immune to evidence and logic, I
            invite your showing me that your position is strong and based upon
            established evidence and valid logic. While I appreciate that you
            did respond to my comment about any 14 year-old today in the United
            States being described as "noncommunicative" [which can be found
            separately at
            http://health.groups.yahoo.com/group/autismfc/message/1560 ], you
            have not yet presented me such evidence to support your position. I
            am disappointed that your most recent comment to me is not up to your
            usual high standards. I am further disappointed that the comment
            from Char has not yet been posted to your blog (but can be found at
            http://health.groups.yahoo.com/group/autismfc/message/1572 ) Please
            do not rush to respond but instead take the time to carefully
            consider these matters and respond when you are ready. In the
            meantime, in this comment entry I will comment further on what you
            just wrote and ask some questions for you to consider when you are
            ready (which I expect would be a new blog entry).

            2. You started your most recent reply with "Let me make my position
            clear - FC is complete bunk." In my recent reply to Leonard, I wrote
            that "I am deeply convinced about the authenticity of FC." However,
            this blog entry is about Facilitated Testimony in the Courtroom" You
            then write "I think whenever a facilitator is in the loop, the
            communication is called into question - unless the facilitator is
            completely blinded to the questions/information." Although our
            positions are different about FC in general, when it comes to FC in
            the courtroom, I do wish to clearly state that in that situation I
            agree with you that the communication is called into question. In
            the case of Sharisa Joy Kochmeister - my information section (a)
            above - her FC was accepted in court in the early 1990's because she
            passed a double blind test in front of the judge and with Dr. Howard
            Shane as the expert witness for the other side. However, as I
            mentioned in my information sections (b) and (d) above - my own son
            Ben did not pass such tests which we voluntarily did with Dr. Howard
            Shane - but I believe (and realize I have yet to provide you any
            evidence) it was because of my son's autism and not because of his
            lack of communication.

            3. You then state that "Simply minimizing "influence" is
            insufficient." But is your statement based on logic? In my
            information section (e) above I mention an alternative procedure -
            asking the person to repeat the information to another facilitator
            who is unaware of the FC with the first facilitator - before
            proceeding with any court proceedings or even accepted the charges as
            a valid report. You know that this alternative procedure was not
            followed in the recent case. In the situation of my son, I wrote six
            days and I still would like an answer from you to the following (the
            question is at the end):

            I am curious if any one here is already aware of the spiritual
            content of the FC messages of my son Ben (now written originally only
            in Hebrew but translated by others into English and please note that
            I have no involvement in promoting such messages but many other
            people do). Leading Torah scholars all state that my son Ben displays
            a vast knowledge of Torah literature (which I doubt you have any
            knowledge about), while I know that the facilitator (not me) does not
            have such a background (but neither do I). If you or others are
            curious, you can click on to:

            http://www.emet8.com

            or

            http://dani18.com

            I do not expect any of you, or Chris Borthwick, to have any interest
            in the content of the FC facilitated with my son Ben, but considering
            the already poor reputation of FC, why should any one try to stop it?

            4. Although you write "Regarding "noncommunicative" I am not sure
            why you are harping on this term" I wish to state that I only asked
            the question one time and then posted one reminder a day later, which
            I do not consider to be "harping on this term." I even posted at
            my "own" website at
            http://health.groups.yahoo.com/group/autismfc/message/1569 "I do not
            wish to make a nuisance of myself, so I will not keep reminding him
            that he has yet to reply." Let's just say that you and I seem to
            perceive things differently. Next you write "This is commonly used
            to describe someone who is cognitively impaired so that they are
            unable to meaningfully communicate." I know that I am extensively
            involved with trying to improve the communication skills of persons
            with no effective means of communication and I did not know about
            such usage of the term "noncommunicative." Where is this term
            commonly used? By the way, what do you meant by "unable to
            meaningfully communicate?" By my human logic this does not at all
            sound like being "noncommunicative." Please explain your logic that
            these two terms are equivalent. You end your most recent comment
            with "To deny that such individuals exist is to be in denial." Since
            I already stated that persons who are brain dead are
            noncommunicative, I do not deny such individuals exist. However, I
            have the extensive experience to know that persons who have the most
            extreme difficulties in communicating can, with sometimes years of
            effort, always be able to learn to communicate. If you have evidence
            that contradicts my extensive experience, please give it to me,
            preferably in the form of citations of peer-reviewed scientific
            studies.

            Arthur Golden of Jerusalem Israel
          • Arthur Golden
            It turns out that my comment to Dr. Novella s blog was not accepted because of a computer problem, which Dr. Novella was kind enough to fix and now both the
            Message 5 of 13 , Mar 27, 2008
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              It turns out that my comment to Dr. Novella's blog was not accepted
              because of a computer problem, which Dr. Novella was kind enough to fix
              and now both the comments from Char and me are on his blog.

              Steven Novella on 27 Mar 2008 at 9:06 am [EDT]

              Note - many comments are being flagged as spam. This typically happens
              if there are multiple URL links in the comment. So there may be a delay
              because I have to review and de-spam such comments.

              If you want to avoid this, then limit your links in comments.

              arthurgolden on 27 Mar 2008 at 10:24 am

              Sorry for causing that problem!

              Thank you for going to the bother of fixing the problem and getting my
              long comment, with its links, onto the blog.
            • Tom Smith
              What intervention in autism isn t complete bunk ? If he worked on the ground with autistics he d be more forgiving of such a gentle, sweet and hopeful
              Message 6 of 13 , Mar 27, 2008
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                What intervention in autism isn't "complete bunk"? If he worked "on
                the ground" with autistics he'd be more forgiving of such a gentle,
                sweet and hopeful intervention. Then if like me he did it and watched
                the "data" on it's effects both to the autie's behaviors and the
                general ambiance of the whole place when working with them and using
                FC, he'd consider it not only a God-send for the work he was trying to
                do, but a blessing for finally being able to get to know the auties
                he's working or living with. He doesn't like the way auties
                communicate? We don't like the ways he communicates.

                But Dr Novella doesn't need to worry about any of that, he only needs
                to worry about his career's bottom line and for that calling "FC bunk"
                is a great boost.

                Dr Novella is an opportunist-careerist and I personally don't care
                about him.

                Tom

                --- Arthur Golden <golden@...> wrote:

                > Dr. Novella finally responded with the following but I am ready to go
                >
                > to bed - any ideas of how to reply from the rest of this autismfc
                > list would be appreciated:
                >
                > Steven Novella on 26 Mar 2008 at 2:50 pm EDT:
                >
                > "Let me make my position clear - FC is complete bunk. I think
                > whenever a facilitator is in the loop, the communication is called
                > into question - unless the facilitator is completely blinded to the
                > questions/information. Simply minimizing "influence" is insufficient.
                >
                >
                > Regarding "noncommunicative" I am not sure why you are harping on
                > this term. This is commonly used to describe someone who is
                > cognitively impaired so that they are unable to meaningfully
                > communicate. To deny that such individuals exist is to be in denial."
                >
                > My original post accessed at:
                > http://health.groups.yahoo.com/group/autismfc/message/1560
                >
                > --- In autismfc@yahoogroups.com, "Arthur Golden" <golden@...> wrote:
                > >
                > > I just posted the following to the blog of neurologist Dr. Steven
                > > Novella at
                > > http://www.theness.com/neurologicablog/index.php?p=212
                > > [with permission for this message to be forwarded by others to
                > > FCworld (where I will know because I am a member there) and
                > > elsewhere but I request that I be notified if done elsewhere]:
                > >
                > > One really final comment:
                > >
                > > Except for someone who is completely brain dead, or actually dead,
                > > Dr. Novella is absolutely wrong when he describes any 14 year-old
                > in
                > > the United States, after at least 11 years of entitlement to a Free
                >
                > > Appropriate Public Education (and probably early intervention
                > > services before age 3) as "noncommunicative" no matter how severely
                >
                > > autistic and nonverbal. I previously wrote that over 30 years ago,
                >
                > > my own 5-1/2 year-old son was evaluated as having very poor
                > > communication skills but after several years of intense language
                > > therapy (which was over 25 years ago) that my son was quite
                > > communicative. Dr. Novella replied in effect that my son was
                > unusual
                > > (and the other persons I mentioned by name) and therefore seems to
                > > imply that his experience could not be used to discuss the efficacy
                >
                > > of Facilitated Communication in more general terms.
                > >
                > > Maybe my son at that point was doing better than others with his
                > > degree of brain dysfunction, but how could any 14 year-old today in
                >
                > > the United States be described as "noncommunicative" except if
                > > completely brain dead, or actually dead? I must publicly object to
                >
                > > such a statement by Dr. Novella, repeated more than once in this
                > > blog. I am open to an explanation about this use of the
                > > term "noncommunicative" from Dr. Novella, a neurologist who knows
                > > about the functioning of the human brain based on deep scientific
                > > knowledge. I realize Dr. Novella states his blog is about the
                > > use of FC, but being "noncommunicative" goes to the essence of
                > > his logic and therefore must be supported by facts.
                > >
                > > Arthur Golden of Jerusalem Israel
                > >
                >
                >
                >



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              • Arthur Golden
                After a full week, Dr. Novella has not posted any reply to my last comment to his blog entry Facilitated Testimony in the Courtroom which can be accessed at:
                Message 7 of 13 , Apr 3 8:02 AM
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                  After a full week, Dr. Novella has not posted any reply to my last
                  comment to his blog entry "Facilitated Testimony in the Courtroom"
                  which can be accessed at:
                  http://www.theness.com/neurologicablog/index.php?p=212

                  At this point I do not expect he will reply further on his blog entry
                  that he started three weeks ago.

                  Meanwhile I will keep monitoring his blog NEUROLOGICA and I expect
                  that eventually Dr. Novella will bring up a relevant subject and I
                  will be able to try to continue our dialogue.

                  After I posted my last comment, I did a little research and I found a
                  relevant article on persons who are "defined" by neurologists
                  as "noncommunicative" - persons in a "vegetative state" or "minimally
                  conscious" (two different situations). The article can be accessed
                  at:

                  http://espra.risc.cnrs.fr/SL_TICS05.pdf

                  For persons in a "vegetative state" or "minimally conscious" there is
                  not enough brain activity for the brain to cause the mind to be able
                  to communicate, but since I do not understand that the brain is the
                  cause of the mind, I believe that even such persons can communicate -
                  at least through the type of Facilitated Communication done by my son
                  Ben. I am looking forward to an interesting dialogue with Dr.
                  Novella at such time that I can bring up this subject again.

                  Art
                • Tom Smith
                  Even if someone is severely noncommunicative , in the nursing field we are supposed to use ANY communication method, verbal or nonverbal, in order to do our
                  Message 8 of 13 , Apr 3 9:53 AM
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                    Even if someone is severely "noncommunicative", in the nursing field we
                    are supposed to use ANY communication method, verbal or nonverbal, in
                    order to do our jobs ethically. This is taught as the HIGHEST priority
                    in nursing.

                    Tom

                    --- Arthur Golden <golden@...> wrote:

                    > After a full week, Dr. Novella has not posted any reply to my last
                    > comment to his blog entry "Facilitated Testimony in the Courtroom"
                    > which can be accessed at:
                    > http://www.theness.com/neurologicablog/index.php?p=212
                    >
                    > At this point I do not expect he will reply further on his blog entry
                    >
                    > that he started three weeks ago.
                    >
                    > Meanwhile I will keep monitoring his blog NEUROLOGICA and I expect
                    > that eventually Dr. Novella will bring up a relevant subject and I
                    > will be able to try to continue our dialogue.
                    >
                    > After I posted my last comment, I did a little research and I found a
                    >
                    > relevant article on persons who are "defined" by neurologists
                    > as "noncommunicative" - persons in a "vegetative state" or "minimally
                    >
                    > conscious" (two different situations). The article can be accessed
                    > at:
                    >
                    > http://espra.risc.cnrs.fr/SL_TICS05.pdf
                    >
                    > For persons in a "vegetative state" or "minimally conscious" there is
                    >
                    > not enough brain activity for the brain to cause the mind to be able
                    > to communicate, but since I do not understand that the brain is the
                    > cause of the mind, I believe that even such persons can communicate -
                    >
                    > at least through the type of Facilitated Communication done by my son
                    >
                    > Ben. I am looking forward to an interesting dialogue with Dr.
                    > Novella at such time that I can bring up this subject again.
                    >
                    > Art
                    >
                    >
                    >



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