What a load of arrogant pseudoscientific self aggrandizing tripe. Truly!…….. First of all I used to observe from an relatively anonymous standpoint patients being seen at the most elite levels of academic medicine on the east coast over a period of 10 years being treated for lets say motor neuropathies. These patients, inevitably would become frustrated with the limits of either the treatments offered or the bedside manor of their physicians or some combination of both, and go to another equally pedigreed academic neurologist say……….Latov or Dalakis , et. all…………. It was a big joke among my cohorts at the time that every time the patient switched to a new big wig in academic neurology, say every 3-5 years on average, and for the lay audience, I’m talking the best neurologic specialists in this highly specialized field of medicine in the world, people Steve Novella would look up to by the way…….. The patient would get a new diagnosis! MMN (multi motor neuropathy), No wait – now it’s CIDP! (chronic inflammatory demyelinating polyneuropathy), no, no, wait its dermatomyocytis!
So brilliant are you all at the mental masturbatory facility of your “science”. So very objective!

Then let’s move on to the vast array of medications that you utilize to treat these (and all) patients ( this will get to facilitated communication later my friends worry you not!). If you look at the PDR (again to the lay audience, the “bible” of prescription medications it’s basically listing of all of the FDA required information for approved prescription and over the counter medications in the US), and look under mechanism of action (or how does this drug work?), you will find that in over 85% of the drugs in use today helping patients cope with disease, they (read medical community) have absolutely no idea how the drug works. They usually venture a guess but are very cautious to disclaim not really knowing the true bio-physiological effect of the drug. So they have no idea.

In fact, in the “old days” (think pre–1990′s) the academic medical community actually had some balls and were willing to humbly defer to the fact that we don’t and can’t know everything but should offer the benefit of exploiting and using drugs that are helpful even if we don’t know exactly HOW they work.
Now, (read post 1990 or so) our cowardly doctors in the name (and spirit of Novella above) have taken up the shield of “evidence based medicine” to cower from pressure the insurance companies and HMO’s, setting new standards for the use of new discoveries to not help patients saying it’s not enough that a drug works,we have to know how it works to offer it to patients! The truth is the doctors gave yup fighting the insurance companies using this new”standard” and adopted it as their own to not look as insipid and cowardly as they really are. Give it a big harvard name “evidence based” and all is well, don’t worry about what we’re supposed to be doing in life like, oh yea curing disease. just publish papers about nothing (read of no clinical significance, i.e to help anyone get better or lead to true clinical advancement in treatment). Then you’ll do real well in medicine. Oh, and then write some sniping articles about pseudoscientific practices like FC and sneer all the way home thinking how you don’t make as much money as your fathers generation when adjusted for inflation – gee I wonder why?

Now to facilitated communication, Steve, motor planning 101. I had a friend who was a professor of psychiatry he was 80 at the time but still played tennis every week, unbelievable fit, looked like 60. So we used to meet and 1 week he doesn’t show up. Brusk message on my voice mail sounding irritated from him instead of apologetic about canceling after the fact. Next week I go to meet him and I see him in his car outside the tennis club parked just sitting and not getting out of his car. I go and knock on the window. He looks startled and peels out of his parking spot leaving me in the street. @ weeks later he’s diagnosed with a frontal lobe tumor which was thankfully removed and he recovered nicely. He later told me that he had been very irritable and found himself in multiple situations where he would go somewhere to do something and was then paralyzed in an inexplicable way from initiating the activity at hand, in my case it was getting out of the car. He knew why he was there he knew what he wanted to do – HE COULDN”T INITIATE THE VOLITIONAL ACTIVITY REQUIRED TO CONDUCT THE MOTOR PLAN STEVE.

Volitional inhibition, ever heard of it Steve? The list of specific dyspraxic disorders are legion. So the crime of ignorance you commit as as an “expert neurologist” is harmful in the extreme to so many people locked in a world of silence by ill informed opinions that have given so little thought to the issues at at hand. It annoys me to no end (this I’m certain you ARE aware of by now) because your have the training and background of thought to give so much more sensitive consideration to the subject were you not blinded by arrogance. You assume cognitive dysfunction where in fact there is nothing more than a global dyspraxia of volitional movement. Just another ill defined motor disease Steve. Of course they can’t be put in a stringent double blinded testing environment with a wall between their helper and them. It’s antithetical to the process.

That’s like taking a post stroke patient who cant talk and trying to grill them in an “objective testing environment” to see whether gentle supportive encouragement and therapy to help them retrieve words and produce speech using patience and multisensory reinforcement helps them to talk. But if they can’t perform as well when stripped of that support in a cold and advesarial testing , let’s say sitting in a room with a tester being drilled on vocabulary, claiming that supportive speech therapy is a hoax if the patient didn’t perform nearly as well as within the confines of a known trusted speech therapist providing support and giving the person needed cues or time. Let’s just throw out speech therapy too, why should we presume that the person has the cognitive ability to speak?

Why because they did it before………..Ignorance guides your thinking about people with communicative dysfunction related to “developmental delay”. They have voice you just refuse to hear it.

So sad really…………………. Best of luck to you Holly.

Thank you for going to the bother of fixing the problem and getting my long comment, with its links, onto the blog.

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

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

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.