The Stuttering Brain

Is Elsevier suffocating yet another stuttering conference?

2012-01-25T19:38:00.000+01:00

Earlybird* member of IFA	€574.08
Earlybird* non-member	€693.68
Earlybird* consumer*	€418.60
Student**	€358.80
Conference dinner	€83.72

Have a look at the IFA Congress 2012 page, and see yet again what happens when the organisers are not doing the work themselves but outsource to Elsevier. Let me make a quick calculation: cheapest possible with early bird. The student fee is the cheapest with 360 € plus 80 € conference dinner. So 440 € plus 4 days accommodation (lets say cheapest 50€). So we are at 640 € plus travelling. Let's say from Britain: 150 €. So we end up with roughly 800 €. And that is the very cheapest! Which student can pay that, except if it comes from a research grant.

If you are a consumer (i.e. stutterer) or a therapist, you must pay at least 1000€. If you come from overseas, probably 1500 or more. That pretty much excludes all except the richest countries.

The key is that Elsevier is taking a profit and you have to pay VAT. And they would claim that they have to pay staff and website. But that is a semi-lie as their staff probably handle 10+ conferences each, and most admin is done by the website.

Is it that difficult to get a local organisation committee together? Try to get a conference centre for a cheap rate from a local council by pleading a charitable goal? Try to organise two dinners at local restaurants for a price of 40€ each instead of a rip-off conference dinner for 80€? Try to make it as cheap as possible for people from non-rich countries?

By the way, Elsevier (and other publishers) is conducting a massive lobbying effort in the US congress to prevent us from receiving the results of scientific research paid by us (or at least the US tax payer). Check this article.

To end, I just want to say that this post is not against the local organisers who surely try their best. And who might well have second thoughts about their decision to involve Elsevier.

1.5 years to write four pages!

2012-01-23T18:47:00.000+01:00

The luxembourgish audiophonological institute has finally managed to produce a leaflet for stuttering kids. It took them about 1.5 years for four pages, even though I have given them a corrected version of their old leaflet.
It's in German and French, and I have to say that at least I cannot disagree with what they wrote, only the infantile font they used. They used to write that stuttering can be due to psychological stress from their social environment but not anymore. Progress has arrived in Luxembourg. See here.

(Thanks to Lukas for telling me about stuff happening in my own country!)

Happy New Year!

2012-01-17T22:25:00.000+01:00

I wish you all a Happy New Year. I know I have not been keeping up with my regular posts. The next months will be a bit stressful because I have to read 3000 pages for an exam (CFA Level 3) and I need to get my book published.

But I do have plenty of material for posts and try to make more time for the blog.You can find my prediction for 2012 on StutterTalk. As usual, I am not very happy with my StutterTalk performance. I keep on making grammatical mistakes, phrase my ideas in strange ways, or just have strange ideas. I am just not good at on the spot performance. I also see that at Toastmasters. I really need to work on that part more... The only type of short-term performance I am good at is making jokes on the spot. Or at least, I think I am. But trying to say something intelligent usually fails to be so...

Oh, and if you want to be a guest blogger, just email me!

BREAKING NEWS: ENDO STOPS PAGOCLONE.

2011-12-10T19:36:00.001+01:00

I have breaking news for you. Endo, the phamaceutical company owning Pagoclone, will stop the trials on Pagoclone completely and focus on their core business model.

As I have already announced, the Phase II trials did not go well (or well enough).

A few thoughts:

1) Endo spent millions on this. Now you know why pharmaceutical companies need to earn a lot of money on successful drugs because they spent so much on those that don't make it!

2) People need to ask themselves why they were part of the hype. And why they interpreted the Phase I and IIa so positively.

3) Thanks to all those who have worked hard to run the random control trials, especially Jerry Maguire. I never shared their enthusiasm, but in science you need to take risks and try it out.

4) This trial has given us information about stuttering, just not the one we want. Endo now has a large sample of control data. We now know much more about the placebo phenomena in stuttering. That is very valuable information, if it is published in a paper...

TED Talk on the brain

2011-12-10T12:08:00.001+01:00

For a visually beautiful introduction to the brain and how scientists are measuring the structure and gene activity. Check out the TED TALK by Allan Jones. You can even access the data on-line. Download the software and zoom into the brain.These maps are important to study brain disorders, including stuttering. As far as I know, no-one is using these maps in stuttering, or working on building up a database of dead stuttering brains.

Would you donate your brain? I am not sure I would. Slicing up my brain would inevitable lead to my final destruction... even though it won't really matter because I am already dead at that point!

I also wonder whether you need healthy, fully developed, and not yet declining brains, ideally 25 years of age. Foundas did some research on the anatomical structure of stuttering brains. But I am not sure if they were dead or not.

(Thanks to Will for pointing this video out to me!)

Paris: ce lundi ou mardi soir?

2011-12-04T09:41:00.001+01:00

Je suis à Paris pour un business trip du lundi au mecredi. Mon hotel est près de George V. Si quelqu'un est intéressé d'aller boire un coup le soir, email me under tom dot weidig at gmail dot com!

Text me under 00352 621 432263.

Sanne Hans: A true role model...

2011-12-03T11:06:00.001+01:00

Another video from Sanne Hans (Miss Montreal) with a good song Addicted to Crying. She is a real role model for people who stutter and for the public. And not one of those Joe Bidens or Emily Blunts that I and no-one else has ever heard stuttering publicly but I have to endure their story on how they overcome their stuttering by doing XYZ...

It could be so easy

2011-12-02T22:41:00.001+01:00

In a sense this is a perfect scenario for those advocating open stuttering, and a slap in the face for those who do not and preach we should not.This young singer very clearly stutters and struggles at time. But she is so relaxed, funny, and just gets on with speaking. And she is a good singer (check at 3:10)

Notice that the audience is not at all embarrassed. Why? Because she is not embarrassed! Isn't that what people sometimes tell us: What's so bad about stuttering, you are just not so fluent. So what? Is stuttering really purely neurological?

Good mix of keynote speakers

2011-11-28T13:01:00.001+01:00

Check out the keynote speakers at the Antwerp Conference: here. It's a definite improvement over last conference. Check also the emergent topics in fluency research: here. This session is for young researchers to present their findings.The conference organizers have definitely taken feedback on board (for example mine), and improved the setup.I will most likely be at the conference, and might propose a contribution.

First Stuttering Conference in India!!

2011-11-24T09:18:00.000+01:00

My good friend and TSB supporter Sachin asked me to put up a link to the first Stuttering Conference in India: check here. He told me that I have many "religious" fans in India!

The meeting is held from December 28th to January 1st in Bhubaneswar (Orissa) on the East Coast. If you live in India, consider taking part! Such conference are a great opportunity to know more about stuttering, possible treatments, and about how other people who stutter deal with their handicap and life.

Mmmmm now that I think about it. I have never been to India... :-)

Stuttering research goes biochemical

2011-11-23T07:50:00.001+01:00

Stuttering research is entering a new phase, the biochemical phase. As far as I know, it's the first research that deals with fundamental biochemical aspects of our brain that are linked to stuttering via genetics research.

Kornfeld on what the three mutations found by Dryana's group do to possibly 10% of us:

...two mutations appear to trap the proteins in the cell’s protein manufacturing center, though some get out before being destroyed. “It’s not an all-or-nothing thing,” Kornfeld says. “Of the material that does get out, its activity is normal.”
But the third mutation causes a larger folding problem and the protein is destroyed just minutes after being made.

I will write more on this in the next post. Fits well into my picture of stuttering...

Kornfeld on therapy: (so you can keep your dream of a cure alive! ,-)

Such findings offer a glimpse at possible future therapies for stuttering. For two of the mutations at least, the problem is not that the protein can’t function, but rather that it
can’t get out of the cell’s protein manufacturing center and go to the intracellular site where it acts to direct proteins to lysosomes. If some compound can be found that helps the protein escape, Lee’s work suggests that it would function normally. But Kornfeld cautions that this type of therapy for stuttering is a long way off.

Check out this article describing work in Kornfeld's lab, and the corresponding article by Lee et al. on Analysis of mannose 6-phosphate uncovering enzyme mutations associated with persistent stuttering.

Lee WS, Kang C, Drayna D, Kornfeld S.
Source
From the Department of Internal Medicine, Washington University School of Medicine, St. Louis, Missouri 63110 and.
Abstract
GlcNAc-1-phosphodiester-N-acetylglucosaminidase ("uncovering enzyme" (UCE); EC 3.1.4.45) is a Golgi enzyme that mediates the second step in the synthesis of the mannose 6-phosphate lysosomal targeting signal on acid hydrolases. Recently, three mutations (two missense and one deletion/frameshift) in the NAGPA gene that encodes UCE have been identified in individuals with persistent stuttering. We now demonstrate that each mutation leads to lower cellular UCE activity. The p.R328C mutation impairs folding in the endoplasmic reticulum, resulting in degradation of a significant portion by the proteasomal system. The p.H84Q mutation also impairs folding and, in addition, decreases the specific activity of the enzyme that folds sufficiently to traffic to the Golgi. The p.F513SfsX113 frameshift mutation adds 113 amino acids to the C terminus of the cytoplasmic tail of the protein, including a VWLL sequence that causes rapid degradation via the proteasomal system. These biochemical findings extend the genetic data implicating mutations in the NAGPA gene in the persistent stuttering phenotype.

Questionnaire on Stuttering

2011-11-13T19:55:00.001+01:00

Lloyd asks for our support:

I am conducting research about employment and people who stutter for my Master of Public Administration degree at Baruch College in New York City. I have created an anonymous on-line survey.

I am writing to ask if you know people who stutter and fluent speakers who might like to fill out this survey. I am looking for as many unique responses (from both groups) as possible. I encourage you to take the survey as well. The survey queries attitudes about the Americans with Disabilities Act, among other things. While this may not be germane to a European audience, I would really like as many respondents as I can get.

Gene therapy for the blind

2011-11-13T19:40:00.001+01:00

William pointed me to a BBC report on gene therapy for the blind. I am sure it's still decades away, and might not even be possible theoretically. The intervention is probably very local, but the damage to the speech system and possibly adaptation is distributed.

Think of bad genes as mistakes in a construction plan for a house. Once the house is built, correcting the mistakes are not helping. Of course, the brain is a bit different, because genes instruct the cells to build proteins for a life time. However, the main fibre structure are set at early age and never change again.

The Therapist-Patient dictionary

2011-11-02T21:47:00.002+01:00

Here is the therapist-patient dictionary. It is actually designed to understand British people, but works equally well for understanding therapists when they talk to you, the patient!!!

Seriously, that's what you have to face up to when you try to discuss science with them! In a clinical environment, I can kind of understand the logic but not in a scientific debate!

Brenda Carey changed her website!

2011-10-30T21:32:00.001+01:00

A reader made me aware of irresponsible marketing by Dr Brenda Carey. She has now changed her marketing strategy from a misleading "Stop Stuttering with ..." to a reasonable and factual "Stuttering Specialist Dr Brenda Carey": check out the website. She and her team are definitely stuttering specialists. I might not agree with everything they do, but, if you lived next door to their practise, I would not hesitate to suggest that you take your child to them.

Interestingly, she changed the text from "..what options are available to stop stuttering" to "what evidence based treatments are available to reduce your stuttering and improve your communication." I would have added "reduce your fears" or "improve your well-being".

Unfortunately, she also shows her "evidence-based treatment" obsession. No surprise here, given that she has been indoctrinated during her PhD in the Onslow and Packman environment. Again, evidence-based practise is in-principle a good idea, but very difficult to implement in clinical practise, especially for stuttering and in the hands of clinicians who lack a rigorous training in science and statistics. Moreover, evidence-based practise requires solid evidence from well-done trials and the disclosure of all evidence. And here she is misrepresenting evidence, something she has not addressed yet. But that's for a another post!

To all people who stutter and those who strive for high ethical standards in marketing therapies, public pressure works as this case shows. Get out there, and loudly express your opinion! Don't let others tell you what you have to accept.

Antwerp Stuttering Conference

2011-10-25T20:15:00.001+02:00

Check out the announcement for the Antwerp stuttering conference in March 2012. I attended last time. My two memories are that I was utterly bored by two key speakers (one of them talking about how to set up a questionnaire!), and on getting nearly sick on eating mussels! I hope they will change the format a bit and have more panel discussions. Debates not monologues!

But overall, a cheap conference worthwhile attending, even if it's only for networking.

Will she change her website?

2011-10-25T19:36:00.001+02:00

Check out Ora's question relating to my post on the unethical marketing of stuttering therapy. He got a reply from Brenda Carey:

Ora, I do thank you for your helpful comments. I certainly did not intend to mislead, and will be changing the wording of my site and its address promptly (as soon as I have the tech support). Regards, Brenda Carey

As in politics, watch their actions and not their words. Let's wait and monitor the site. But as she writes, she needs to find another web address.

Thanks to the reader who made me aware of the website, and all others who supported my post and put ethical standards above sensitivities of a paid professional!

Stop Dr Brenda Carey

2011-10-11T20:40:00.000+02:00

[The situation has changed after writing this post, and Brenda Carey has changed her website. Please see here.]

A reader has pointed me to this rather outrageously marketed website Stop Stuttering by Dr Brenda Carey. A highly irresponsible marketing strategy if you ask me: to suggest that you stop (a marketing place holder for cure?) stuttering with her, even for kids. The sentence "Stop Stuttering with Dr Carey" reads in parents and pws's mind as "Dr Carey can make you stop stuttering".She falls below the ethical standards that I would expect of a therapist.

I find her advertising blatandly scientifically misleading the visitors to her website. She writes that

"This means that it has most research evidence to support its use" and "The Lidcombe Program is a highly effective treatment for children who stutter" citing Jones, M., Onslow, M., Packman, A., Williams, S., Ormond, T., Schwarz, I., et al. (2005). Randomised controlled trial of the Lidcombe Programme of early stuttering intervention. British Medical Journal, 331, 659-661.

But guess what? She has forgotten the negative follow-up study, but she is in line with her Lidcombe folks: CLAIM SUPPORTING EVIDENCE BUT IGNORE BAD EVIDENCE. Whether they do it on purpose or are just very bad scientists: I leave this to your opinion. But the fact is that no-one ever about talks the follow-up study of the flawed original Lidcombe study: Three of the children (16%) who had completed treatment successfully had relapsed after 2 or more years of speech that was below 1% syllables stuttered. That's about the recovery rate! Not to speak about those that could not be contacted again and many other methodological weaknesses. But you could argue that those who would not have recovered anyway have lighter stuttering symptoms. Fine but no cures proven as far as I see. No stopping of stuttering.

She further writes that The Lidcombe Program can reduce stuttering to very low levels, on average, in 17 hours. Sounds a bit like saying: You can reduce your weight by 10 kilos in one month. Yes, you can. So ladies tell me: Did you keep the lost weight off?

And the worse is her psychological pressure on parents with visual images of a little scared child.

Mark Onslow and Ann Packman, are these your high ethical and scientific standards that you have taught Dr Brenda Carey?

2011-10-02T14:51:00.001+02:00

Judy Kuster's International Stuttering Awareness Day (ISAD) Conference is open until October 22nd, 2011. It's the 14th conference that she has organized and there are always some interesting articles: people who stutter and clinicians sharing their experience. Usually, I get an email asking to publicize the event, but not this year maybe my blog has ceased to be important...

Check out Drayna's summary of genetics results. I plan to ask a few questions.

You can leave questions for the panel of experts in Office Hours.

Have a look at the conference. She does a great job to get people to write and debate. And you get a feeling of how the Internet web pages looked fifteen years ago! ;-)

Do specialists get better outcome than generalist clinicians?

2011-09-18T12:10:00.002+02:00

I had an idea for some useful piece of research, which would be a change to the research time wasted on useless research.

The treatment of non-specialist SLTs always struck me as scandalous from my own experience and that of others. These are people who have visited university for four years with one course at best on stuttering by an expert, but more typically a few lectures giving by a semi-crackpot prof on what causes stuttering. Then, due to the dictatorship of academic degrees and professional qualification, society gives them the monopoly to treat people who stutter even though they have no clue whatsoever. The clever ones openly admit to their cluelessness on the matter and refuse to treat. Thank you for your professionalism and putting ethics before money! Even though you are probably the non-specialist who would best treat people who stutter! The others are the "I am a qualified SLT and I know what to do." Run, run fast!

Well that is theory! But is correct? What I want to see is the following outcome study. Take 100 people who stutter, assign them to expert SLTs and generalist SLTs, and let's see what's happening. Will the experts get better results???

Parry's Valsalva theory and treatment

2011-09-06T11:55:00.001+02:00

A reader has asked me about my opinion about the Valsalva theory and treatment created by William Parry. Check out Parry's website. As two year ago, I have not made up my mind.

At best, his theory is a partial theory of stuttering and only focuses on the stuttering and blocking events. For Parry, the mis-use of the natural Valsava mechanism greatly blows up the symptoms of our inefficient speech system. Relaxation of the muscles involved in a Valsava mechanism helps reducing the tension and severity of symptoms. It seems to me that his method is similar to muscle relaxation techniques.

I have added a diagram that I found on his page that illustrates his theory. Have a look at it! Let me know of your opinion.

Self-help in Sarajevo

2011-09-05T09:11:00.000+02:00

On Tuesday evening, we met up with Alan who is leading the effort of setting up a stuttering organisation in Bosnia. He met us at our hotel and we drove into the surrounding hills to a restaurant with a superb view over Sarajevo. He showed us pictures of his sponsored trip to attend the ISA conference in Argentina. Without any prompting on my part, he also had a picture of the ISA board meeting, and pointed to Thomas Krall, the German representative at ISA. According to Alan, Thomas was behaving out of place and
verbally attacking certain people. Alan added that he was told that Thomas "used to be a nice guy". It's good to know that the information I posted on TheStutteringBrain is backed up by another witness. Clearly, the German stuttering association must react, restore their reputation, and choose a new representative.

Alan also confirmed what I have always been saying about stuttering conferences: No-one ever says anything negative about anyone's ideas, projects, talks or research. It's an unspoken taboo to criticise or enter into a healthy debate. (And here I don't mean personal attacks.)

We then drifted into other areas. Alan, a chemical engineer doing his PhD and lecturing, was asking me about theoretical physics and the attempt to unify the laws of nature. So I explained the current attempts and cleared up some confusion. He then asked about the meaning of life. To which even I have no answer! ;-) I just said that science is about describing how the world works and not why it is how it is. And I said that our moral behaviour is most likely a product of evolutionary psychology. We are good because we need to live in social group, but we can also be aggressive because we have to defend ourselves against other tribes.

He had to leave early because his young son was ill. We spent the day sightseeing, and I really love Sarajevo. Of all the cities I have seen in the Balkan, Sarajevo is the most original and most beautiful. The old city is very relaxed with many cafés in an old style surrounded by beautiful hills.

That evening we met up with the informal self-help group of Sarajevo. Alan couldn't attend, but two people who stutter were there, plus one of their friends. In good Bosnian style, each of the three represented one of the three major groups: Bosniak, Serb, and Croat. I did not notice a difference in stuttering between them.

We went to a nice café. We talked about many things, among them the current economic and political situation. They were all pupils at the time of the siege of Sarajevo and lost some of their childhood to the war. And today they have or are just about to finish their university degrees in business studies and civil engineering. They said that many young people want to leave due to a lack of opportunities and the frozen political situation. That would be a shame, because their brains are needed to build up the country. Sarajevo certainly has a lot of potential, especially for tourism.

We talked about stuttering, too, or to be precise about their stuttering. None of them attended proper therapy apart from the usual treatment by clueless professionals who are no experts in stuttering. They certainly showed a willingness to meet up and discuss, but were still very much under the psychological impact of their stuttering. They told me of their fears to talk in front of people, job interviews, and addressing people. I was very much like them, and still am to some degree. They understand cognitively that there is no need to be afraid or ashamed as it's not their fault, but still they avoid talking or feel the shame and fear. I told them that stuttering should not decide on their life, but that they need to decide and speak despite stuttering. They should go into fearful situations and be more open about their stuttering. They agreed but at the same time said that they feel fear and discomfort.

Thanks for the hospitality and I wish them good luck for setting up an association in Bosnia! They are all bright and intelligent, and will succeed!

Stuttering in Serbia, Montenegro, and Bosnia

2011-08-30T09:08:00.001+02:00

I am currently on a beach holiday with Jelena. On our way down from Belgrade, we met and stayed at Tiana's parents' place. She is a high school student, and lives in Prijepolje in South-West Serbia, close to the border with Montenegro. And her brother is a great fan of strawberry ice cream!

Yesterday, we met up with Gordana (see picture). She is a student in English and French and comes from Budva on the Montenegrian Coast, not far from famous Sveti Stefan. We spoke about her recent therapy experience and she also taught us some new Salsa moves! And today, we are heading to Sarajevo to meet up with Alan and the local self-help group. Should be fun! I'll post group pictures....

Two must-read up-to-date summaries

2011-08-25T16:23:00.000+02:00

Here are two articles with an up-to-date summary of research findings in brain imaging and genetics.

Soo-Eun Chang wrote the first review Using Brain Imaging to Unravel the Mysteries of Stuttering. She has been spending a lot of years brain imaging at the NIH under Christy Ludlow, and has now moved for more independent research. I met her and Christy at NIH a few years ago. She is modest and diligent. Expect her review to be the same: measured and well-researched.

Drayna and Kang have a review on genetics research Genetic approaches to understanding the causes of stuttering (though expect that they talk a lot about their research) with the following abstract:

Stuttering is a common but poorly understood speech disorder. Evidence accumulated over
the past several decades has indicated that genetic factors are involved, and genetic linkage studies have begun to identify specific chromosomal loci at which causative genes are likely to reside. A detailed investigation of one such region on chromosome 12 has identified mutations in the GNPTAB gene that are associated with stuttering in large families and in the general population. Subsequent studies identified mutations in the functionally related GNPTG and NAGPA genes. Mutations in these genes disrupt the lysosomal targeting pathway that generates the Mannose 6-phosphate signal, which directs a diverse group of enzymes to their target location in the lysosome of the cell. While mutations in these three genes can be identified in less than 10% of cases of familial stuttering, this knowledge allows a variety of new studies that can help identify the neuropathology that underlies this disorder.

So if you want to be up-to-date, read those two review articles!

Wanne be a reviewer for my book?

2011-08-18T21:09:00.000+02:00

If you are interested in reviewing my book, please send me an email. The book is about a new biopsychosocial model that allows modelling all drivers of human processes. You can find more information on this website. I also have a section on stuttering.

Auditory-motor integration in different part of brain?

2011-08-16T11:59:00.006+02:00

Martin Sommer's team has published new results on their TMS experiments. Martin's student Nicole Neef presented results at the Oxford Dysfluency Conference three years ago on that same topic.The big issue with TMS is that you need to aim correctly to ensure that you "magnetically" knock out the targeted regions. I am somewhat puzzled what more they found. I would have to dig out the paper to see what has now changed to warrent an Elsevier press release. They claim that they have found further evidence that auditory-motor integration is located in a different part of the brain, because TMS has the reverse effect on people who stutter. Such a profound re-organisation is probably the effect of some neurobiological abnormality arising in early childhood.

As a footnote, you might notice that Alexander Wolff von Gudenberg is an author of the article. He is the boss of the Kassel Stuttering Therapy, and I introduced Martin to him with the aim to give Martin plenty of experimental subjects for his experiments. They regularly put clients into a bus and drive them up to Goettingen with their will [as opposed to "against their will"]. So delivering brains for research gives you co-authorship!

Here is the published summary:

..The dramatic but short-lived effect of hiding the sound of one's own speech indicates that the integration of hearing and motor functions plays some role in the fluency (or dysfluency) of speech. New research has shown that in adults who have stuttered since childhood the processes of auditory-motor integration are indeed located in a different part of the brain to those in adults who do not stutter...Dr. Nicole Neef and Dr. Martin Sommer from the University of Goettingen, together with Dr. Bettina Pollok from the University of Duesseldorf, studied the performance of a group of adults who stutter, as well as a control group of adults who do not stutter, in a finger tapping exercise. They used Transcranial Magnetic Stimulation (TMS) to interfere temporarily with brain activity in the dorsolateral premotor cortex while the participants tapped their fingers in time with the clicks of a metronome. In control subjects, disturbing the left premotor cortex impaired the finger tapping, but disturbing the right premotor cortex had no effect. In stuttering adults, the pattern was reversed: the accuracy of finger tapping was affected by disturbing the right hemisphere, and unaffected when disturbing the left.Previous research has already linked stuttering with a right-shifted cerebral blood flow in the motor and premotor areas during speech. In this new study, a shift of auditory-motor integration to the right side of the brain occurred even in a task not directly involving speech. Thus, in the brains of adults who stutter there appears to be a profound reorganization possibly compensating for subtle white matter disturbances in other parts of the brain - the left inferior frontal regions. These findings shed light on the extent of the reorganization of brain functions in persistent developmental stuttering.

"Right-shift for non-speech motor processing in adults who stutter" by Nicole E. Neef, Kristina Jung, Holger Rothkegel, Bettina Pollok, Alexander Wolff von Gudenberg, Walter Paulus, Martin Sommer, and appears in Cortex, Volume 47, Issue 8 (September 2011)

Because of stuttering?

2011-08-16T10:24:00.002+02:00

I know that TheStutteringBrain has been quite silent. I am currently working on my upcoming book intensively, and just didn't come around writing posts. Recently, I came across this statement:

Some stereotypes are self-reinforcing. If someone tells you over and over that you are oppressed, if you hit an obstacle and fail, like all of us do at some point in our lives, a convenient excuse is that you are discriminated against

I also noticed that we are often using stuttering as an excuse for failure: I didn't get the job, girl, recognition, the promotion, the attention, the qualification BECAUSE of stuttering. But everytime I probe us, I discover that stuttering was not the cause of our failure or at least not the only one and definitely not an insurmountable one. No, we either did not have the qualification, the charm and looks, the charisma, the ability for hard and dilligent work to succeed.

Here is a story from my life. I blamed the fact that I didn't have a girlfriend on my stuttering. Then I went to a youth camp for stuttering young people organized by ELSA (European League of Stuttering Associations), and thought that now I will get a girlfriend! When that didn't work, I started thinking that maybe it was not just due to my stuttering! ;-)

So the next time you fail. don't blame it on stuttering.

New trial for Pagaclone participants?

2011-07-12T19:46:00.001+02:00

A reader informed me that

I’ve been advised that Endo is going to launch a new Pagoclone study involving people who have already participated in the trial. Interested participants (again, it’s only for those people who have already participated in a Pagoclone trial) should contact Dr. Angelo Sambunaris ...

If the rumour turns out to be true, several questions will arise: Does Endo want to test whether a subgroup benefits from Pagoclone or whether it's just a fata morgana? Who is Dr Sambunaris? What ever happened with Jerry Maguire as chief investigator? Is that the reason he doesn't mention Pagoclone any more? What ever happened with the trial data? Will it be published or not?

I am President of Greenhearts Toastmasters Club

2011-06-23T12:15:00.005+02:00

I spoke about Toastmasters many times before, and what a great learning environment to face up to your speaking fears and develop public speaking skills. Ideal for the transfer and maintenance phase of an intensive therapy.

I am now President of Greenhearts Luxembourg Toastmasters Club. At first, I declined because I felt it was too much work. ;-) But then I realized that I should do what I fear, am uncomfortable with, or do not have experience of. Being the president of a club of 50 people is definitely a useful experience. On the organisational, behind-the-scenes, and running the committee side, I don't see much problems (so far). Also because my fellow committee members are all reasonable people. ;-) But I am not really a natural presenter when it comes to thanking everyone, being nice to everyone, only mentioning the good side, and so on. I need to talk at each meeting, and report on our activities. That's slightly different to preparing a speech and knowing it by heart.

So I challenge you to join Toastmasters or go into a new experience! What doesn't kill you makes you tough!

Great StutterTalk interview with a mother who did Lidcombe

2011-06-21T22:24:00.005+02:00

Great interview by Peter from StutterTalk on a mother's experience with Lidcombe. And how she got promised the gold standard, and she was told how all experts agree. Again the same fallacy. Lidcombe works perfectly, so if it doesn't work, the parents are to be blamed or the treatment has not been done correctly.

Listen from 28:00 onwards for a very powerful report of the mother...

Even though it's a good interview. It's still frustrating to see how the mother struggles to understand the phenomena and commits fallacies, but also Peter's replies and statements on the evidence base on Lidcombe is not exactly correct. But mind you even what Nan Ratner said on StutterTalk was not exactly correct. This is just the trouble of the whole field, the debates are filled with not exactly correct statements.

Outcome trial on Phonation Intervals Program

2011-06-21T22:16:00.002+02:00

I want to share with you this information on a big outcome trial founded by the NIH. Roger Ingham told me about the trial several years ago when I visited him in Santa Barbara. The program runs from 2006 to 2012. I don't know much about the Phonation Intervals treatment. He explained it to me, but I forgot. I think it's based on the idea that speech initiation is the core issues and phonation is trained, similar to fluency shaping?

The context for this study is an exhaustive empirical examination of a research-based and computer-managed treatment for adult developmental stuttering known as the Modifying Phonation Intervals (MPI) program. Within that context, the studies described in this proposal will test a number of hypotheses concerning the relationships among several critical factors: stuttering behavior, the neurology of stuttering, the cognitive and affective components of stuttering, stuttering treatment approaches, and the maintenance of stuttering treatment gains. Thus, this proposal simultaneously addresses two overwhelming needs: efficacious stuttering treatments for adults, and the integration of
basic knowledge, such as knowledge about the neurology of stuttering, with information from treatment research to develop comprehensive neurophysiologic and behavioral models of stuttering and stuttering treatment. It is hypothesized that (a) a necessary prerequisite for durable treatment benefits is normalized cerebral blood flow within regions that constitute an emerging model of the neurophysiology of stuttering, and (b) this result can be achieved by establishing a speech pattern that requires the production of speech with a reduced proportion of short phonated intervals (Pis). These aims will be met in a treatment comparison study that employs repeated behavioral, cognitive, and affective evaluations derived from the MPI program and a prolonged speech (PS) program that represents the current standard of care for adult stuttering. This evaluation format will be conjoined by repeated PET scanning, to identify specific speech-motor and neural system changes generated by these treatments and described by an empirically derived stuttering system model. Both treatments include identical transfer and maintenance components plus within- and beyond-clinic assessments that extend over the course of treatment and 12 months after its cessation. Repeated performance-correlation analyses of the derived brain imaging data will test the principal theoretic proposition that the system model regions functionally control the efficacy of stuttering treatment. The overall study also constitutes a Phase II treatment efficacy study that will determine the need for a Phase III treatment trial of the MPI program.

Mindfulness in stuttering?

2011-06-17T08:10:00.000+02:00

Boyle wrote an article on the potential use of mindfulness in the treatment of stuttering. The abstract is well written and the article looks worth reading. I myself have tried out mindfulness but not on a long term basis. The idea is simple: you just sit silently and direct all your attention to a single source of attention: be it breathing, eating a grape, your inner self, or focusing on a visual stimulus. Even five minutes give you a sense of peace. But of course no cure at all for stuttering, but rather gives you the ability to take a step back from daily life, reduce your stress levels, and reflect on your condition. I see mindfulness as a non-pharmaceutical treatment to decrease anxiety and stress in order to start working on stuttering or the psychosocial maladaptations.

Some readers always imply that I am against qualitative research or discussions. That is not the case. However, I do take the view that you either write qualitatively about techniques or experiences, OR you write a serious scientific articles. The mixture of both is usually a disaster.

Here is the abstract:

The use of mindfulness training for increasing psychological well-being in a variety of clinical and nonclinical populations has exploded over the last decade. In the area of stuttering, it has been widely recognized that effective long-term management often necessitates treatment of cognitive and affective dimensions of the disorder in addition to behavioral components. Yet, mindfulness based strategies and their possible usefulness in stuttering management have not been described in detail in the literature. This article seeks to engage professionals who treat stuttering in a conversation about the possible usefulness of incorporating mindfulness training into stuttering management. A review of the literature reveals that there is a substantial overlap between what is required for effective stuttering management and the benefits provided by mindfulness practices. Mindfulness practice results in decreased avoidance, increased emotional regulation, and acceptance in addition to improved sensory-perceptual processing and attentional regulation skills. These skills are important for successful long-term stuttering management on both psychosocial and sensory-motor levels.

Ready to help researchers?

2011-06-11T20:33:00.004+02:00

Researchers are always looking for experimental subjects: a resource and time intensive part of being a researcher. In February, I posted a call for volunteers from Deryk Beal: see here. His call is still active, so please if you can get to Boston and you stutter, let him know! Sending me your calls for volunteers or other causes makes sense as TheStutteringBrain reaches out to many worldwide:

Hi Tom

Thank you for posting our call for research subjects on your blog. As a result of your post at least 3 different people who stutter contacted to participate. It may not sound like much, but that is a large number of people considering that your post is free and originates in Luxembourg! One of those people was able to go on to complete both an experiment at MIT and later one at BU. Unfortunately the other two were not able to participate.

We are still actively seeking participants. We have currently recruited 11 PWS who have completed the study, over a 8 month period, but we need approximately 10 more PWS

Deryk.

Hitten loves us!

2011-05-28T10:53:00.000+02:00

I like Hitten's Stuttering Hub. His posts are short, his comments are (mostly) wise and not just empty talk, and he doesn't make the mistake of launching into causal theories of stuttering but focusses on the reaction to (his) stuttering. I recommend his blog to anyone who wants to address the psychosocial aspects of stuttering: the fears, the sense of underachievement, frustration, self-esteem issues, and negative attitude. He also offers free counselling sessions.

If you want to know why Hitten loves us, read his post on attending a 10-day meditation course.

Crackpot Award for PARTHA BAGCHI

2011-05-26T08:08:00.002+02:00

The StutteringBrain awards a Crackpot Award to PARTHA BAGCHI for his ability to ignore the current scientific understanding of stuttering. Even a quick look at wikipedia gives a better understanding of stuttering. He writes on his website Stammering Cure Centre.

Stammering .. is an acquired behaviour not inherited.

WRONG. Stuttering runs in families, and about half is due to genes. Moreover, gene mutations have been located, most members in some families are stuttering, and monozygotic twins are more likely to stutter than dizygotic twins.

Here are some of the many causes according to Bagchi.

Some of the causes that lead to the development of stammering are :

1. Childish imitation of other stammerers either in the family or outside;
2. An after effect of certain serious illness such as typhoid, malaria, prolonged fever, convulsion etc;
3. Feeling of insecurity in the early age of school;
4. Strict, rude & rough guardianship;
5. Sudden physical or mental shock;
6. Shy or introvert nature from childhood;
7. Very fast speaking habit;
8. Mal-adjustment between parents;
9. Disturbances and quarrel in the family;
10. If the thought process is very fast;

11. Lack of co-ordination between thinking & speaking;
12. Stiff competition in all spheres of life;
13. If one is multilingual;
14. Side effects of strong medicinal action specially allopathy medicine;
15. Subjected to tremendous fear and tension from childhood;
16. If the child is left alone for some time without parents or familiar people;
17. When a second child is born in the family;
18. Seeing some horrifying scenes in real life or in movies;
19. If the child is weak or sickly;
20. When pressurised by parents to achieve difficult and high targets;
21. When forcibly changed from left handed behaviour to right-handed;
22. The child tries to attract attention and stammers when neglected;
23. If the teacher is strict and always punishes and terrorizes the child;
24. Humiliation in front of friends and class mates;
25. If one is frightened of every little thing;
26. Hurting one's head due to some accident, specially the back side of the head and
27. If parents and family members all talk very fast, the child is unable to compete with their speed and thus faulters.

As always, millions have experienced one of these "causes" but none stutters. And millions stutter than have not experienced many of these "causes".

India, watch out for his expertise!!!

Note: I am not saying that some of his advice might not be useful, but I am only referring to his understanding of stuttering in the light of scientific research.

I am quite busy right now

2011-05-26T07:53:00.001+02:00

Some might have wondered why the posts are becoming fewer and less elaborate. The simple reason is that I have a new job (I am employed as an expert to regulate a very big re-insurer, i.e. review their internal mathematical risk models from earthquakes, nuclear incidents, market/credit risk to pandemics plus risk management and governance issues, and I represent Luxembourg in international working groups on the drafting of the new Solvency II regulatory framework for insurance companies), work on my upcoming book on the biopsychosocial model, on a workshop on the framework, and a new website project.

But here are all the topics for posts currently in the pipeline:

more details from the Wwwwwikileaks affair (including two new documents, one being a legal threat to TheStutteringBrain)
a few new results on brain imaging
on the endless parade of useful research results
some more interesting websites
replies to reader's questions
my comments on StutterTalk's interview with Jerry

What is going on in Argentina?

2011-05-20T07:55:00.002+02:00

I just received this news from a reader regarding events at the World Congress in Argentina of the International Stuttering Association (ISA). Can anyone confirm this or deny this? If no-one confirms, I will delete the post again. I blacked out the names until I get more confirmation.

Are you at the World Congress in Argentina? [....]

I have been back to my sources but only have somewhat sketchy details. I am not at this event but I understand that the International Stuttering Association is on some type of an implode. An ex-director XXX has been having some ongoing dispute with XXX and other Board members over non adoption of a strategic report that he prepared. He has been threatening to take legal action against XXX. The harassment issue must be a rehash of what you wrote [...]

I understand that the Argentinians gave XXX a 1 hour time slot to stand up in front of who ever wanted to listen and then then voice his unwarranted grievances. This was quiet embarrassing for many people and a lot chose to leave the room. I understand the ISA was very unhappy with the Argentinians for doing this.

Tell CNN how Oprah sold cures that didn't exist

2011-05-11T07:41:00.000+02:00

CNN gives readers the opportunity to say how the Oprah show has affected them: here. Check out a few posts on how the Oprah show sold us cure that were none.

When is a person a stutterer?

2011-05-06T07:44:00.000+02:00

Nathan shares my suspicion that Newton was not a stutterer, and he questions whether we could even have labelled him if we had one video of him!

I watched two videos this week where people were having difficultly speaking and if these existed of Newton, I think there would be a medium strength case that he stutters. With these people it is really not clear. They probably don't, but there are some points where both of these people have difficulty speaking that is typical for me and some secondary behaviors.

The computer scientist Donald Knuth seems to struggle with speech. And so does 2010 Physics Nobel Prize winner Novoselov.

Shocking or not?

2011-05-03T21:41:00.002+02:00

Donald Trump called Seth Meyers a stutterer: "I thought Seth Meyers -- his delivery frankly was not good. He's a stutterer." And Stuttering Foundation of America slammed Trump: "We at the Stuttering Foundation find it discouraging that in 2011, Donald Trump has chosen to use the word 'stutterer' in a derogatory fashion, something to be made fun of, to describe Seth Meyers' speech at the annual White House Correspondents' dinner."

I am not so shocked. He probably used it more in the sense of mental hesitation. What do you think?

Unlearn fear

2011-05-03T08:06:00.000+02:00

A reader asks:

Is it possible to reduce your autonomic response to moments of stuttering? I mean the pounding heart, tightness in the stomach, etc. If it is possible, how does one go about doing this? By just entering into more situations that evoke the "fight or flight" response?

The pounding heart, and tightness in the stomach is due to a reaction to the situation you are in. Your brain has learned to associate certain situations with fear and anxiety. So the next time your brain encounters a similar situation, it automatically triggers fear and anxiety TO HELP YOU TO BE PREPARED FOR THE DANGEROUS SITUATION. The reason your brain has learned to associate certain situation with fear is because your belief system has said that the situation is dangerous.

Two things you must do:

1) Re-visit your beliefs (Is stuttering in front of people dangerous?), and change your beliefs. At the end of the day, you need to have a belief like "It is not my fault that I am stuttering and there is no reason to be scared, embarrassed, or uncomfortable."

2) Unfortunately, changing your beliefs is not enough, because your brain has learned the association and you can only undo it by learning a new association. This means that you need to enter the situation over and over again, so that your brain realizes that it's not a dangerous situation. There are several techniques to achieve this effectively: here is a rough summary.

Part of the problem

2011-04-30T19:40:00.002+02:00

Here is an analogy that captures an important aspect of stuttering: the swallowing-a-pill analogy.

When you drink water, you swallow the water without a problem. When you have to swallow a pill, you might choke on the pill. Being aware of swallowing makes us choke.

Being aware of stuttering makes the stuttering worse.

Guitar calls Lidcombe critics ridiculous

2011-04-24T23:01:00.001+02:00

Barry Guitar launched a frontal attack on those who are doubting Lidcombe in this radio interview on NPR. The journalist Jane Lindholm asks Guitar why some doubt the evidence base of Lidcombe due to small sample siz. He says that "This is the most ridiculous critique you can imagine". Check at 7:30 minutes. He refers to 100 studies showing efficacy with gold standards. He says that critics don't want to see 100 studies but 1000s studies. He also says that other treatments have no evidence at all that they work.

He falls into the common traps:

(a) equating perceived success in an outcome trial with success of the method itself. (it could well be that other treatments are as effective, and success is not due to Lidcombe specific issues.)

(b) He did not mention the lack of good long-term follow-up. The only follow-up with small sample size did not show results above natural recovery, even if I assume that the considerable drop out did not relapse.

(c) He tells us a wonderful story of how he "cured" a boy, without telling us that it could very well have been natural recovery.

He also attacks "this experimental psychologist Pete Howell who feels that it is inhuman or heartless to treat children with Lidcombe" for his article in Nature. When in fact, Pete Howell only wrote:

More controversially, some researchers believe they can induce fluency in people, children in particular, using verbal operant procedures, similar to the reward and punishment techniques used to train dogs and other animals.

He only said that (a) the method is controversial, (b) conditioning is what you also do to train dogs. So what's wrong with his statement. He does not say that it is ethically wrong to train kids because that is how you train dog!! Barry Guitar should read the article!

I was always suspicious about Barry Guitar's credentials as a scientist. Especially after hearing his "naive" talk on his work on temperament. (Check out Per Alm's deconstruction of his temperament work. Sorry don't have a reference right now) For me, Guitar is a dedicated therapist, and I would recommend him to others. But he is a mediocre scientist in the mantle of "a respected authority" and an academic professorship draining resources and young brains from good scientists.

Fraud and weak research

2011-04-19T10:03:00.001+02:00

Maybe you heard of the scandal where a study "established" a link between vaccination and autism, and parents (mostly mothers) in the UK went nuts and stopped vaccination. This study has now been severely discredited.

Ora made me aware of an interesting article about the quality of scientific research in the psychological and social research area. See Lehner's article.

An interesting article in the New Yorker magazine about a phenomenon in scientific studies.
Before the effectiveness of a drug can be confirmed, it must be tested and tested again. Different scientists in different labs need to repeat the protocols and publish their results. The test of replicability, as it’s known, is the foundation of modern research. Replicability is how the community enforces itself. It’s a safeguard for the creep of subjectivity. Most of the time, scientists know what results they want, and that can influence the results they get. The premise of replicability is that the scientific community can correct for these flaws.
But now all sorts of well-established, multiply confirmed findings have started to look increasingly uncertain. It’s as if our facts were losing their truth: claims that have been enshrined in textbooks are suddenly unprovable. This phenomenon doesn’t yet have an official name, but it’s occurring across a wide range of fields, from psychology to ecology.

I suggest you read the first page (screen) and then stop and think hard what might account for this effect, before you read the rest of the article.

More of the Australian gold standard

2011-04-18T07:47:00.002+02:00

Here is an article for all those that claim that Lidcombe never claims to work magic.Even if you argue that the journalist got it wrong and they don't claim cures, you must wonder how the journalist came to the idea of "cure". This fits well into the last post where the therapist suspected the child's family to be the cause of the "non-cure", because she too was indoctrinated with the "cure". Here is the article.

Online remedy for stuttering
Nick Galvin
May 2, 2010

Relief may be at hand for millions of people around the world who stutter, thanks to the pioneering work of Australian experts.

The Australian Stuttering Research Centre in Sydney has won a federal grant of nearly $5 million to develop a system that sufferers can access via the internet. The simple program has cured pre-schoolers in 12 weeks.

''Parents ask kids every now and then to say what they just said without the stutter,'' centre director Professor Mark Onslow said. ''It works amazingly well but the problem is that there aren't enough speech pathologists to deal with all the kids who are stuttering.''

Tom: You have been out-handicapped

2011-04-09T14:09:00.006+02:00

As you might know, I am an active member in Toastmasters, and regularly participate in contests. Last Saturday, I participated in the Area contest (after the club contest) but I didn't make it to the first three of eight. All eight were very good speeches. I spoke about The King's Speech. An Indian guy won with a speech on Mr Impossible who tells us not to try, and he had polio as a child leaving him with difficulties in walking. He had a very good theme, and comes across as a very nice guy and relaxed speaker. After the contest, someone came to me and said that he liked my speech, but said that I should move and speak of other topics than stuttering, which I agree with, and he finished off by saying: "Tom, great speech but you have been out-handicapped". ;-)

In any case, everyone liked my speech, so here it is:

You helped me find my voice

In this grave hour, perhaps the most fateful in our history, I send to every household of my peoples, both at home and overseas, this message, spoken as I were able to cross your
threshold and speak to you myself. For the second time in the lives of most of us we are at war.

[PAUSE]

Fellow Toastmasters, Honoured Guests, Contest Chair,

These are the opening words of King George VI on the eve of World War II.
Despite his stuttering, he overcame his fears to address the British nation.

It's also the final scene in The King's Speech,
the Oscar winning movie directed by Tom Hooper, and starring Colin Firth,
who I am sure most women here know about

I understand what the king went through,
........ because I also stutter.

The king and I,
we know exactly what we want to say, but we just cannot get it out at that moment.
Stuttering is a neurobiological weakness in the brain that leads to temporary jams.
As you can imagine the handicap leads to fear, shame, stress, causing even more stuttering.
Unfortunately no cure exists but good therapy can ease the symptoms.

After many failed attempts, the King visits an eccentric Australian speech therapist: Lionel Logue, who teaches him speech exercises for fluency.
But they also work on overcoming his fears, and building his confidence as a speaker.

Today I want to tell you about one eccentric therapist that has helped me!

Actually, many therapists.

You! All of you at Toastmasters have provided me with a safe learning environment.

Three years ago, I was hesitant to join Toastmasters.
I felt like Mr Bean entering a bodybuilding contest.

But you have helped me improve my public speaking.
By being a good example on how to give a speech.
And, sometimes, by being a good example on how NOT to give a speech.

I have also benefited from your patience to listen to all of my speeches.
And from your constructive feedback.
Which, sometimes, I have to say, was too nice!

I learned from you that speech fluency is just one part of the success of a speech
There is so much more to communication.
Body Language: [Tom moves],
Content: To be or Not to be.
Humour. [ha, ha, ha!],
Confidence (chest out),
Intonation. (deep Oh yes.)
and ........ pauses.

Fluency is not my strong suit
but I discovered other qualities to compensate for that.

I also learned from you that I was not alone in my fear of public speaking.
I always thought that only people who stutter are scared of speaking in public.
Why else would you be scared to speak???
After all, all of you know how to speak.

Of course, some of you have joined TM precisely to overcome their discomfort.
And you have gained confidence and enjoyment in public speaking, too.

In a sense, we’ve been therapists for each other

That brings me to what Toastmasters is all about.

We all have our stories to tell.

But unfortunately we often don't tell them.
We are scared, we are embarrassed, we avoid, we obscure, and,
in my case, sometimes we stutter.

The king had doubts about his up-coming coronation.

Logue provoked him: Why should I waste my time listening to you?
And he angrily exploded: Because I have a voice!
......
And Logue replied: ...yes, you do.

Fellow toastmasters, honoured guest, contest chair,
We all have a voice. We just have to find it and make it heard

As for me: I have found mine in this speech to you.

Thank you!

Lidcombe never fails, only parents do

2011-04-01T18:00:00.000+02:00

Here is a comment from a mother in which she says the therapist blames them for the relapse, because Lidcombe works so it must be the parents:

Hi, my son has been on the Lidcombe therapy for 3 months seeing a SLP almost every week in that time. We saw a big improvement for the first few weeks but after that his stutter pattern has returned to how it was before, some days really bad and then a gradual decrease to hardly any problems and then over the next week it becomes worse again. It seems now the therapist is at a loss at to what to do and seems convinced something is happening at home to make it keep getting worse and then better which is insulting. She has blamed my husband because hes in the army and works away alot, then it was my eldest son because he left for uni, nursery, and now she seems to be pointing the finger at me, saying he has to much of an attachment to me (surely if this was the case I wouldnt be able to leave him at nursery). Im so frustrated with the whole experience and feel were no further towards helping him that we were before we started the course. I hope other people have a better and more productive experince from this course. I feel it is more suited for children with less severe stutters xx

I am not going to the Oxford Dysfluency Conference

2011-03-30T20:33:00.001+02:00

Some good news for some! I decided not to go to the Oxford Dysfluency Conference. It's just too expensive. First, I was not given the reduced fee unlike at all other conferences in the past including Oxford. Apparently, Elsevier is not allowing this. And then they charge 20% VAT, because Elsevier organises it and not Dave Rowley as part of his university. Claiming back VAT is about as easy as understanding stuttering. So I would end up with a bill of over 1200 Euros for 3 days. Too bad. It was a nice place, and an OK conference.

The only person non-sensitive to the price are those who are paid for by government and on blind travelling grants. I also heard that others from less well-off countries or therapist not funded by their department are unable to attend.

In general, conference organisers like Elsevier are destroying real science and draining the system out of money with expensive conferences and journals.

Death to Elsevier and long live Plos and privately-organised conferences! There is a BSA conference one week later. Maybe I am attending it, and try to get a few people together to talk science.

Breaking News: Chinese dopamine genes not-confirmed

2011-03-28T07:40:00.002+02:00

Finally some evidence that stuttering research is actually following the scientific method. In a highly unusual move, Drayna's team has actually tried to replicate a study rather than churn out new stuff. They looked at the Chinese gene study, and could not replicate the study.

Kanstantsin made me aware of this new study (that was probably finished years ago but only now published! So the wider community was deprived out this valuable information despite Drayna being funded by the publicly-funded NIH). He writes:

Drayna is one of the authors. of "Evaluation of the association between polymorphisms at the DRD2 locus and stuttering."

They basically tried to replicate the 2009 study from chinese group (I think you blogged about it). [Yes, I did in More Genes from China!] "Association between dopaminergic genes (SLC6A3 and DRD2) and stuttering among Han Chinese."
In that 2009 study chinese researchers found asociation between one form of DRD2 gene (dopamine receptor gene) and stuttering.

So in this new study, Drayna & co also tested DRD2 gene and used bigger sample and tested europeans and brazilians; and they did not find any correlation that was observed by chinese group. They also note that in chinese study, the variant of DRD2 gene claimed to be associated with stuttering was not only found in 96% of PWS, but also in 88% of controls, so it probably does not have any significant effect on stuttering.

...It looks like so far only mutations of some lysosomal genes were clearly shown to be associated with stuttering (or at least with some forms of stuttering in some people).

We cannot exclude that the Chinese stuttering genes are not present in European or Latin America people. However, they only found a 96% to 88% ratio, which make me very sceptical. In fact, I should have noticed this weakness in their paper, and report on it. That teaches me (and all of us) to actually read the whole papers carefully word by word, and not just the abstract.

Moreover, the dopamine imbalance theory propagated among other by Jerry Maguire has lost a vital empirical ally. He is left with his PET study, that as far as I know has not been replicated yet.

Needless to say, that the strategy to find signals in statistically significant differences, like 96% to 88% ratio, is precisely what stuttering research does. And needless to say that most would go away in attempts of replication. But luckily that is not better done, so the pseudo-scientific researchers are still doing fine.

So who will non-replicate Drayna's lysosomal results? Note that here I did point out some Xi Square statistical weaknesses. ;-)

On the origin of our feared letter

2011-03-20T08:54:00.002+01:00

I had an interesting thought. I am currently revising a late draft of my upcoming book, and I have a section on stuttering. I was writing about associations with different letters that stutterers might acquire. So for some the letter /d/ might be a problem for others the letter /m/.

Then I realized that /d/ is the first letter of /daddy/, and /m/ of /mommy/. So I was thinking that maybe we develop an association between a stuttering event and the letter that we most or first used as a child in speaking our first words.

So a child might first say /mommy/, and obviously she will first experience delays of speech initiation on the letter /m/. And the brain will look for correlations, and realize that when I have to say /m/, I am likely to have issues. So the brain stores an association between the letter /m/ and a stuttering event. My guess is that if you fear /d/, you might have been a daddy child! Or in other languages, /p/ for /papa/.

Students: here is a final year project: test my theory!

find stutterers
ask them about their feared letter.
ask them whether they were mummy or daddy children.
find stutterers from different countries where daddy does not start with /d/ or mother not with /m/.
analyse data: especially compare countries.

Stuttering WWII general

2011-03-19T18:23:00.000+01:00

Nathan found a stuttering WWII US general:

This was never mentioned on any famous PWS list. Apparently there was an American WWI and II general who stuttered significantly. Here is the Time Magazine article. The stuttering isn't mentioned until page 3.

A stutterer reads the news: Please support Alex's campaign!!

2011-03-14T21:08:00.004+01:00

I got a request from Alex von Gudenberg, who created and leads the only healthcare-approved clinic for stuttering in Germany. They have launched a campaign for more public awareness. Please support his campaign. They have asked for the news to be read by a person who stutters! Luckily only one day! ;-)

Dear fellow stutterers,

I am the director of the Institute of the Kasseler Stuttering Therapy (KST) and was a severe stutterer.

By chance we created a campaign against discrimination of stutterers in Germany, which is becoming quite successful. The film maker Henning Burk, a stutterer himself, did a report for a TV station (3SAT) about stuttering in our institute when The King's Speech started. He had the idea to ask for stutterers to read the prime time news in the two major German channels to achieve more tolerance and attention for stutterers.

It started more as a campaign without real chances of realisation. But now a website with information and on-line signing of the petition exists: HERE.

Stutterers in major German cities supported this campaign by collecting signatures at the movie theatres, in addition to press releases and TV appearances in support of the idea. The German media (radio, TV, print media) jumped it.

About 1000 people have signed so far.

Therefore I wonder, if this might have potential for a worldwide campaign. It does not seem too ambitious to get Colin Firth and David Seidler and other as supporters.

What do you think of this idea?

Best wishes from Germany

Alexander von Gudenberg

(You can also email him: AWvGudenberg at Kasseler-Stottertherapie.de)

Slate Columnist Nathan Heller stutters

2011-03-13T21:26:00.000+01:00

Nathan Heller has made me aware of his article on The King's Speech in Slate. Nathan works there as a columnist, stutters himself, and is a fan of my blog!

If you want to hear an intelligent and insightful review on The King's Speech: check out his article.

Amnesia cures stuttering?

2011-03-13T18:37:00.002+01:00

Stuttering Stanley asks:

Tom, do you think that if a stutterer had sudden total amnesia, he or she would cease to stutter? I ask because I surmise that if I have times where I am fluent, then why can't I find a way to ALWAYS be fluent? Doesn't that indicate that I have the capacity to be 100% fluent? Maybe if I forgot about stuttering...it would disappear?

My answer is the following. If you have a total amnesia (where I include semantic memory but also associative memory), you will be like a young child at onset. You have a brain that is prone to abnormally long and frequent jamming or delays of speech initiation. These delays will feel long but just like a mechanical failure in the sense of accidentally hitting a chair because you had a glitch in your motor code for walking. You will not feel any fear or nervousness. And your jamming will probably only be noticeable in very stressful or demanding situations. And you will not have any secondary behaviour. However, over time you will feel the functional handicap and the social reaction. Coupled with your knowledge of what is normal speech and what role you want to play in society as a person, you will start to react to your jam-prone system and develop secondaries. You will add tension to get out what you want to say more quickly. You will also learn to fear certain words and situations. This associative learning will then trigger more stuttering and nervousness.

To sum up, your neurobiology is still there, and the information content that you have lost in amnesia will be filled again with learned behaviour, fears, and beliefs. BUT THEY WILL LIKELY TO BE DIFFERENT TO YOUR ORIGINAL LEARNED BEHAVIOURS, FEARS, AND BELIEFS.

You can be 100% fluent but only if you manager to control your jamming in two respects: (a) you take measures to reduce the neurobiological jamming, such as staying calm in demanding speaking situations, sticking to pauses, shortening your sentences, and so on (b) you take measures to prevent yourself/your brain from launching a reaction to jamming that is counter-productive to speaking fluently.

Wireless neurostimulation for stuttering?

2011-03-12T18:33:00.000+01:00

Manik sent me a link to a venture capital enterprise, Microtransponders, which developped the SAINT™ System, a wireless neurostimulation technology platform to treat neurological disease. He is excited about a possible application to stuttering. Nature has already published an article on treating tinnitus in an animal model.

The website, technology, and research looks solid, and should not be rejected off hand. I will write to them and ask whether they have ever considered stuttering. I am not exactly sure how a treatment for stuttering should work. As far as I am aware, stimulation has only increased and never decreased stuttering. However, every new approach should be checked for.

Let us assume the technology works, would you accept having implants, even if very small, implanted in your brain? I can only see severe stutterers considering this option.

Another article on the King's Speech

2011-03-09T21:39:00.000+01:00

A reader asks me to post this link to an interesting article (apart from the science part which is not wrong but very fuzzy.)

You are an inspiration and a hero to the stuttering community, and a
role model for children who stutter. PWS trust you to be independent,
fair, and not influenced by anyone.

You showed that PWS are not hopeless victims, but smart and driven.
You have hundreds if not thousands of loyal readers who support you
and thank you. But you also have a few enemies.

There is a article written by a female PWS (I am not sure she knows
much about the causes of stuttering, the way she explained it sounded
fishy to me). Can you post this on your blog.

http://www.timesunion.com/opinion/article/The-king-and-us-myth-and-all-1017358.php

No stuttering mice!

2011-02-28T13:20:00.001+01:00

Currently, I am reading articles by science journalists in well-respected newspapers and magazines, telling us about the prospect of stuttering mice. And other highly inaccurate stuff.

I am nearly convinced that there will NOT be a stuttering mouse. The Drayna group claims that single mutations in one of three genes, forming part of a metabolic pathway, causes stuttering in nearly all cases. This finding needs to be replicated for me to believe it.

Consistent with their finding, they (or collaborators) plan to create mutations in mice, and see what is happening. They will most likely find subtle damage in some cell types in some brain regions, but they will not hear stuttering mice. People need to get away from the myth that a gene is coding for a special property. Genes deliver the instruction to create a protein, and in combination these genes can create complex molecules needed by the body. My theory is that the mutation only affects specific brain regions that happen to be responsible a stable communication between language and motor areas. Subtle damage to these regions leads to an unstable, low capacity speech system.

Quality of human discipline research

2011-02-23T16:22:00.000+01:00

Ora writes

Beyond the familiar problems we've discussed - such as publication bias, the tendency to publish results which show something, anything, rather than nothing - we have the confounding effect of bad data.

Take a look at this NY Times article. 20 percent of the data is just wrong?!

From Freud to fMRI: Untangling the Mystery of Stuttering

2011-02-21T12:13:00.001+01:00

There was a symposium on stuttering with Smith, Drayna, and de Nil organized by Nan Rantner.

This symposium will track current developments in the study of stuttering, the fruit of recent collaborations among researchers in the fields of genetics, speech motor control, and language processing. Until the past decade, much of the research into this common yet poorly understood communication disorder tended to be narrowly focused on accounts within a single discipline, from psychoanalysis to learning theory to articulatory control to hemispheric asymmetry. In this symposium, we will provide examples of the cross-disciplinary research that is changing consensus on the probable basis for stuttering. Recent advances in genetics, brain imaging, and speech motor control will be discussed in terms of their ramifications for better understanding this elusive disorder as well as treating it more effectively.

All are excellent scientists. However, they are foremost experimentalists and clinicians that work within their respective paradigm. Their challenge is to work on a cross-disciplinary theoretical framework on stuttering and I fear they will get slowed down due to a lack of 100% conceptual and theoretical rigour. I discussed with all of them. They are all bright, but no-one of them is an excellent theorist.They are very much in their experimental paradigm, and their talks suffer from 100% conceptual clarity. Ann Smith is the one with the clearest conceptual mind. But even she is in my view stuck in a single functional cause picture, as far as I remember from our short discussion at Oxford.

I find the mention of the name "Freud" in the title complete and utter kitsch. Why do we need to mention his name or work? Can we not focus on the here and now?

Different voice, no stuttering?

2011-02-20T15:39:00.006+01:00

An interesting self-report of a reader. I am wondering whether the change in voice in puberty affects stuttering. In a sense, the brain does not identify its own voice, and you might have the choral effect!! ;-) That's the first time, I hear this:

I've had MASSIVE fluctuations in stuttering around the time my voice changed. These were much more than a period of good or bad days. I was reduced to a complete absence of stuttering. I could not make myself stutter during these periods.

When I was going through puberty, I stopped stuttering for 2-3 months. I was reading fluently in class and I introduced myself in front of roughly 300 people. I was as surprised as my classmates and teacher were. I attribute this to my voice changing and I gradually relapsed. Around this same time I was becoming really popular so my confidence might have increased, but that might have been a side-effect of the fluency. As I was relapsing, the biggest change back to stuttering was when I got an ear infection, that caused fluid build up in my ears reducing my
hearing and amplifying my voice. I had tubes put into my ears to get my hearing back and I stopped stuttering for about 2 weeks. Just mention when I had tubes put in my ears to remove fluid and fix my hearing, there was a massive change after the operation. This is something that happened in less than an hour and the only thing that changed was my hearing. There is also a possibility that one of the drugs used in the surgery did this to my stuttering, but I doubt it. There was a gradual relapse over a 2 week period. I'm reasonably certain I had stopped stuttering for 3-4 days and then it gradually returned over a period of two weeks.

We were on a field trip for school the day after and a teacher was stunned when I ordered perfectly at a restaurant. The speecheasy worked the first time I tried it, but the actual device did not.

It seemed like the times I was fluent, I was talking and I knew I was hearing my voice, but at the same time I was wondering where that sound was coming from. I had a similar experience with a new dirt bike. I knew I was causing the sound and how to control the throttle according to the sound of the motor, but I couldn't figure out where the sound was coming from. I had less of the same experience on a third dirt bike and on the forth I either didn't have this experience or it was very brief.

I do not stutter in bars (and places with noise in general), but I don't like going. I can talk to people normally for hours in bars, but I go to them maybe once a year. This is not an exaggeration. I do not have to do anything to manage stuttering and I'm free to say anything I want effortlessly.

Why apparent short-term success in Lidcombe treatment

2011-02-17T15:27:00.004+01:00

Perti asks me a question about Lidcombe:

I am an SLP student who has been wondering about the Lidcombe program for a while [...] I've just been wondering about the Lidcombe success rates. How come the Jones et al (2005, British Medical Journal) had such a huge difference between the control group and the actual subjects. The field of stuttering is a complex one, as our professor said. One could fill a library with books that are all about stuttering and still none of them is absolutely right about it. The problem is that somehow they managed to pull off such a huge difference between the groups. The same incidents seems to occur with other studies as well like Miller et al (2009, American
Journal Of Speech-Language Pathology) and Latterman et al (2008, Journal of Fluency Disorders). The sample was very small so some of the differences could be explained by pure statistics. I don't really believe in completely behavioral therapy because stuttering has (probably) a mostly neurobiological background. I am wondering what were your thoughts about the systematical, but yet small data, concerning the success of Lindcombe. The spontaneous recovery rates might easily have huge differences between such a small sample groups but it's consistent between few studies that I've quickly read through.

Here are possible explanations for the big difference:

1) Every adult treatment of nearly any type leads to a significant reduction in dysfluency. Therefore, we must NOT look at outcome after therapy, but six months or one year after therapy. And that's EXACTLY what happened in their follow-up study, some relapsed.

2) The trial were not blinded at all, and the control group did nothing. That's VERY different to the standard random control trial, where both groups are given IDENTICAL pills. Here only one group was given treatment, and the other group waited.

3) The children in treatment have much more familiarity with the therapy environment. They have been conditioned to behave in a different way. They have been told that stuttering, or non-control of speech, is undesirable.

4) The treated kids are used to perform in the clinic environment. For them, it has become a kind of playground, and so later measurements are probably biased downwards.

4) You cannot even talk about success of Lidcombe, because the success factor might be a component common to all interventions, e.g. parent-child intervention.

5) Sample size is small.

6) I would not be surprised if behavioural treatment makes kids who recover naturally recover faster. I speculate that the neurobiological issue resolves within weeks or months but that the learned behaviours are still there without the neurobiological basis and will only gradually wane. But treatment might eliminate these learned behaviours faster.

And more questions:

And I was also wondering about the high spontaneous recovery rate you mentioned (~80%?). That seems a tad high and if I remember right it was originally conducted by the Yairi group at the University of Illinois. A systematic review about the articles widens and drops the scale by a large margin. I have to admit that since stuttering isn't something I've really kept up with I can't remember the exact numbers and right now I can't open up the article database to check it... the clinical data I've heard of was also less than 80%. But by no means, it had absolutely nothing to do with science. This just came up so that's why I even mention about it. I am very interested about everything in a very strict and scientific way. That's why I am pretty suspicious about the Lidcombe program.

The number depends on the definition. What exactly is stuttering? For example, the latest large scale survey has many more than 5% of kids stuttering, leading to even higher recovery rates. But some criticise the too stringent definition.

I personally prefer to work with 80% or 90%, because I want to be conservative. If I say a lower number and I am wrong, treatments will suddenly be effective without being effective. But if I aim for a higher number and I am wrong, the burden of proof has just been higher for treatment efficacy.

The answer is that there is no real answer. The best I can say is that the vast majority of kids recover. As a first approximation rule, if your child stutters, expect that he or she will recover.

Charles Van Riper, the father of what we consider stuttering therapy, once said (I've got it on tape as well) that he had never ever seen any stuttering person cured - except that maybe one or two adults were capable enough to control the stuttering so that they could avoid the persons they interacted with from noticing that they actually had some trouble with their fluencies. Charles Van Riper himself knew his 'techniques' very well and could control his stuttering but after listening to his audio recordings I could easily notice that he had some short pauses and other minor dysfluencies in his spontaneous speech. That is why I don't really believe in anything like that. They taught us that the early intervention has (probably) a positive affect on child's attitudes and feelings towards his/her stuttering. By addressing that early on the speech therapy would be easier and therefore more successful. As stuttering has a huge, huge and huge impact on the stuttering person it's really hard to work on stuttering when someone has been stuttering without any kind of (professional) support or help through his/her childhood and even early adulthood.

I agree.

Yet again they make fun of us

2011-02-15T17:43:00.000+01:00

A reader asked me to post this

Hi Tom,

http://www.itv.com/itvplayer/video/?Filter=213151

This is a clip from last night's Celebrity Juice (show from the UK). The presenter made a disgusting reference to the King's Speech at the very beginning imitating a bad stammer for the audience to laugh....

The show starts with "Keith's Speech" in front of a microphone... "For the ffffffffffifth time in the lives of most of us there is a fffffffff celebrity juice, I call on you to stand calm as I sssssssssssssolemnly promise there will be no more rude fffffffffffffffffffffffffffff jjjjjjjjjjjjjjjokes". Then he stands up and is completely naked from the waist down with his penis on show although pixelated which isn't really the impotant part. The fact that he made fun of a bad stammer for the audience to laugh at the stammer was the unacceptable part.

I don't understand why there are people out there who think this is "entertaining" or "funny". If someone made the same fun of blacks or disabled people it would be considered of bad taste right? I looked at Youtube but they don't have the clip there unfortunately.

Making fun of stammerers in such a way is by no means acceptable or appropriate so could you post this on your blog and encourage people to send a complaint to ITV either by phone or email (viewerservices@itv.com), I have already sent mine.

The second cure of Martin Schwartz

2011-02-13T11:51:00.000+01:00

At age 20, when I was an exchange student at Indiana University, I decided to do something against my stuttering. I went to the university book shop, and found a book by Martin Schwartz: The Airflow technique. (I think) I still remember that I was highly embarrassed to buy the book, I guess buying books on stuttering is a bit like buying condoms! The book cover promised the solution to all my questions: What is stuttering? How do I cure my stuttering? I read a very dramatic expose of Dr Schwartz's quest for knowledge. But the more I read, the less convinced I became about what he offered, especially because he came up with a theory, where I clearly saw that different interpretations of the data is possible, too. And he proclaims a cure.

Now nearly 20 years later, Dr Schwartz has a second cure! ;-) I am just wondering why he bothered to come up with a cure. Is one cure, the airflow technique, no enough?

HIS "National" Center for Stuttering has a recent press release: Breaking News: A Possible Cure For Stuttering. He claimed that Thiamine "cures" stuttering in 30% of people who stutter. I feel pretty miserable, because I have a ready post for a Crackpot Award, but I never posted it because he is not quite a crackpot. He is just a very bad scientist with excellent marketing and sales skills. If I include those, 50% of researchers would be crackpots!

So I am going to post the text here, and I leave it to my readers to rip apart the methodology. To all students,
this is a good exercise for you. Please post your criticism. I'll do mine in a later post.

Here is the description:

"Thirty-eight male stutterers between 21 and 37 years of age were randomly divided into two groups. One group received 300 milligrams of Thiamin and the other, a placebo. To avoid bias, neither the investigators nor the subjects knew whether the subjects were taking the vitamin or the placebo.

The experiment lasted for two weeks.

The subjects were given a standardized test for stuttering that measured the average percent syllables stuttered from three different speaking situations: face-to-face conversation, reading and telephone conversation. The test was given twice: once prior to the experiment and again at its conclusion.

The data were analyzed statistically.

As expected, the difference in the average score between the placebo and the vitamin groups at the beginning of the study was not significant. Simply put, the two groups were essentially identical to begin with.

Similarly, for the placebo group, the average percent syllables stuttered prior to and after the experiment was also not significant. Thus, no placebo effect occurred for the placebo group.

Finally, the findings for the vitamin group were highly significant, with a before and after difference of such magnitude that the likelihood of it occurring by chance was less than one in a hundred.

A closer examination of the data from the vitamin group revealed something interesting and unexpected. There were really two groups: one group whose stuttering had largely been eliminated by the vitamin and a second whose stuttering had not changed at all.

Six of the 19 subjects showed the dramatic effect. For the remaining 13, application of the statistical test revealed no significant difference from the pre-experiment scores. All of the significance had come from this small subgroup."

It was decided to follow these six individuals to see if the effect persisted. They continued to take what was now openly acknowledged to be the vitamin.

"It has been more than 7 months and their speech has remained essentially free of stuttering," said Dr. Schwartz

"But that's not all. A new effect has been observed: the subjects now report that their habit of scanning (looking ahead for feared sounds, words and speaking situations as they speak) has disappeared. In other words, they no longer think about their speech. The anticipatory stresses associated with their stuttering are gone.

NSA Research Symposium

2011-02-12T19:48:00.001+01:00

Here is the program of the research symposium of the National Stuttering Association on July 5th and 6th 2011.

I am a bit taken back by Jerry Maguire's talk title: Advancements in the pharmacologic treatment of stuttering! Advances? Pagoclone was hailed as the advance, and the first serious trial has not been successful as far as I can see. Of course, the outcome data has not published. I seriously hope that this will be done soon. I must say that the title is a smoke screen. Jerry would do better to tune down his rhetoric. The same is true for his book which is more of a propaganda book! We all admire his commitment and focus on finding a pharmaceutical treatment, but science only cares about facts and benefits from a neutral discussion. A sales pitch is misplaced at the NSA symposium.

I like the high numbers of group discussion. I hope that the discussions will be beyond the typical "Thank you very much for all your efforts. I was wondering whether", and be a though honest no-niceties no-consensus-seeking intellectual debate. The success of such discussions depend on the moderators.

Volunteers needed for a Boston-based study!

2011-02-11T14:00:00.001+01:00

If you are able to get to Boston, please consider volunteering for a study:

The Speech Communication Group of Research Laboratory of Electronics, Massachusetts Institute of Technology (MIT) is looking for a volunteers who stutter to particpate in an NIH-funded research on persistent developmental stuttering.

Inclusion criteria (apply to all):

1) You have persistent developmental stuttering (also known as stammering).
2) Age between 18 and 50.
3) No history of speech or language disorders, apart from stuttering.
4) No history of hearing disorders.
5) No history of neurological or movement disorders.
6) Speaks North American English as the first (native) language. First langauge refers to the language in which your parents spoke to you when you first started speaking as a child.
7) Not currently taking any medication that may affect speech
8) Have NOT previously participated in any studies conducted at Speech Communication Group at Research Laboratory of Electronics, MIT.
9) IMPORTANT: The participant should be compatible with magnetic resonance imaging (MRI).
For details, see the webpage at:
http://web.mit.edu/mitmri/MRsafety.htm#Screening

Nature of the experiment:
Please see the following webpages for a brief description of the study:
http://web.mit.edu/cais/www/SubjectsNeeded_Stut.pdf

The sample consent form contains more details information:
http://web.mit.edu/cais/www/Consent_PWS_MASTER_040610.pdf

The study will be completed in 2 - 4 experimental sessions. One of the sessions will take place in Martinos Imaging Center in Building 46 of MIT. The other sessions will take place in Building 36 of MIT.

The speech of the participant will be examined by a certified speech-language pathologist during one of the sessions to verify and characterize the participant's stuttering.

In the imaging session, we will acquire structural and functional images of the participant's brain. This session will last about 50 - 70 minutes.

In the behavioral experiment, which will be carried out in MIT Building 36, the participant will be asked to read aloud various speech materials such as words, sentences and paragraphs, and to speak spontaneously on a given topic.

In one of the these sessions, we will use a magnetic device (Northern Digital WAVE system: http://www.ndigital.com/lifesciences/products-speechresearch.php) to record movement patterns of the participant's speech articulators. This technique is non-invasive and not painful, but it requires temporarily attaching small sensors to the subject's head, lips, jaw and tongue.

Each of these behavioral sessions will last approximately 2 hours.

The compensation will be $50 per hour for the initial screening interview one of the behavioral sessions, $75 per hour for the MRI session, and $100 per hour the WAVE articulometric session (sensors attached to the articulators).

MIT COUHES protocol number: 1003003787 (Expiration date: 04/14/2011)

Contacts: Shanqing Cai (cais@mit.edu) or Deryk Beal (dsbeal@bu.edu)

!!!!!!!!!!!1000 posts!!!!!!!

2011-02-09T15:31:00.004+01:00

This post is the 1001th post on TheStutteringBrain blog! We need to celebrate. When I was starting to write in 2005, I was not sure whether I would keep up with publishing but I did! I also have nearly 100 followers, and 20'000 page views per month.

Below is the graph of the evolution over time. You can see that the increase is relatively linear, but will probably level off in the next years. The numbers also depend on how many posts I write. But overall I am getting close to half a million visits to the blog.

A great majority of my readers are from the US, followed by the UK and Germany, but readers are from all around the world. I receive a few emails every week from readers from asking for advice to sending my interesting information what certain people or association privately do.

I am very likely the most popular and most read blog on stuttering. Number of awards received from stuttering community: ZERO. Number of awards received by Emily Blunt for saying: I stuttered. ONE. Number of people invited for key note speeches for being famous or rich, for talking about their miraculous recovery from mild stuttering, for scientific sloppiness or propagating crackpot ideas: TOO MANY. Number of emails received from readers thanking me and saying that they like my blog: HUNDREDS. Speaks volumes.

Crackpot Award for Dr Miriam Stoppard

2011-02-08T15:28:00.001+01:00

TheStutteringBrain awards a Crackpot Award for Dr Miriam Stoppard for the outrageously uninformed article Stop stammering ruining your big speech in the Daily Mail.

Here is the laudatio:

According to Dr Stoppard's website, she "has been at the forefront of the revolution in health information since she began her writing and broadcasting career in the early 1970s." Her article on stuttering shows that she has not even made the effort to consult wikipedia on the causes and treatments of stuttering. Nor has she consulted with any expert on the field. But why should she? She is known by millions, and she is a real medical doctor.

She has acted in a highly irresponsible manner, which in our opinion has violated her own standards of ethics as a medical doctor, and misinformed the general public, parents, and patients on stuttering. As we do not want to waste our time on explaining line by line why she is terribly wrong, we refer to a response by the British Stammering Association.

We speculate that the only reason she wrote this article, despite her very glaring lack of insight or expertise on the matter, is an effort to keep in the limelight to sell her books and services.

Ask yourself: How can I trust Dr Stoppard for any advice on any health issue, if she got her advice so clearly wrong on stuttering. If she is sloppy on stuttering, is she sloppy on other issues as well? She has lost her credibility.

Crackpot Awards are given to people who make claims about stuttering that clearly violate scientific facts and express these views with crackpot-like confidence.

We are very grateful to The King's Speech for giving us the wonderful opportunity to out those unprofessional professionals.

NOTE on BSA's response:

Stammering is acquired - but we do know from recent genetics research that people who stammer are born with the predisposition and that it is highly unlikely that without this predisposition a child would begin to stammer.

I don't agree that "Stammering is acquired". Stammering occurs (or shows itself) at a certain point in development like you only notice that your engine has a flaw when driving at high speed. The neurobiological basis for stuttering was either already there from the start (i.e. genes), or in the course of development due to an incident, but well before the actual onset. It's like saying traffic jam is acquired in a city that has been growing too fast with appropriate planning.

Abnormal auditory system in people who stutter?

2011-02-06T21:42:00.000+01:00

Here is the latest research finding on the stuttering brain. The Japanese scientists claim that people who stutter have abnormal auditory regions. I am a bit confused by this piece of research.

I also want to point out that this signal, if true, might not be the cause of stuttering directly. It could be that this abnormalities is responsible for non-recovery, but not for the cause of stuttering.

Neuroimage. 2011 Jan 11. [Epub ahead of print]
Spatiotemporal signatures of an abnormal auditory system in stuttering.
Kikuchi Y, Ogata K, Umesaki T, Yoshiura T, Kenjo M, Hirano Y, Okamoto T, Komune S, Tobimatsu S.
Department of Otolaryngology, Faculty of Medicine, Graduate School of Medical Sciences, Kyushu University, Fukuoka, Japan; Department of Clinical Neurophysiology, Faculty of Medicine, Graduate School of Medical Sciences, Kyushu University, Fukuoka, Japan.
Abstract
People who stutter (PWS) can reduce their stuttering rates under masking noise and altered auditory feedback; such a response can be attributed to altered auditory input, which suggests that abnormal speech processing in PWS results from abnormal processing of auditory input. However, the details of this abnormal processing of basic auditory information remain unclear. In order to characterize such abnormalities, we examined the functional and structural changes in the auditory cortices of PWS by using a 306-channel magnetoencephalography system to assess auditory sensory gating (P50m suppression) and tonotopic organization. Additionally, we employed voxel-based morphometry to compare cortical gray matter (GM) volumes on structural MR images. PWS exhibited impaired left auditory sensory gating. The tonotopic organization in the right hemisphere of PWS is expanded compared with that of the controls. Furthermore, PWS showed a significant increase in the GM volume of the right superior temporal gyrus, consistent with the right tonotopic expansion. Accordingly, we suggest that PWS have impaired left auditory sensory gating during basic auditory input processing and that some error signals in the auditory cortex could result in abnormal speech processing. Functional and structural reorganization of the right auditory cortex appears to be a compensatory mechanism for impaired left auditory cortex function in PWS.

The real king's speech.

2011-02-05T14:42:00.001+01:00

THE KING'S SPEECH

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My dear friend Einar has sent me this link on the king's speech. Georg VI clearly has a stuttering problem, but I must say that he is handling it extremely well. He has long pauses to give him time, and he only starts struggling a few minutes into the speech. Watch from 5:55 onwards, you see the time if you go Full Screen. Despite his hesitations and visible struggle at times, his performance is clear and strong. Not like my performance on StutterTalk or yesterday when I gave a radio interview to be aired on Monday.

I am nearly convinced Firth was also working from this video as the secondaries ressemble those in the movie.
But I must say that the stuttering is more severe in the movie than at this public talk. However, I can very well imagine that his stuttering was more severe at times, and at times he was fluent.

Do we stutter alone in the universe?

2011-02-04T18:58:00.004+01:00

Today, I want to talk about life on other planets.

The Kepler telescope has made a huge step in understanding the likelihood of extra-terrestrial lifeforms. The telescope is fine-tuned to look at the light-emission of stars, and detect fluctuations due to the passing of a planet in the foreground. They found 5 passings of Earth-size planets with acceptable temperature while observing 156'000 stars. So roughly at least 1/3 * 10^(-4) of all stars have one habitable planet.

The universe contains about 3*10^32 stars, so roughly 300'000'000'000'000'000'000'000'000'000'000 stars.

So we have about 10^28, i.e. 1'000'000'000'000'000'000'000, habitable stars in the universe.
All of theses are candidates for life.

Assume that only in 1:1'000'000 life develops, so 10^22 planets.

Assume that only in 1:1'000'000 multi-cellular life develops, so 10^14 planets.

Assume that only in 1:1'000'000 human-like intelligence develops, so 10^8 planets.

I further assume that ALL these human-like intelligence civilisations need a form of communication similar to human speech. And in some of those beings this functionality will be disturbed but not completely broken, and they will also react to this dysfunction.

So there should roughly be 100 million planets with stutterers!! WOW!

But there is only ONE TheStutteringBrain blog in the WHOLE universe. Keep on reading this blog! ;-)

The King's Speech review

2011-02-03T23:23:00.001+01:00

I have finally watched The King's Speech, but not in the cinema. ;-) Here is my review:

The most interesting aspect for me was the relationship between the two men. Showing how even the king is very human and mortal. The movie was also interesting in playing with the class system that reigned in those days. But in a sense the movie also degraded the king. They applauded him for reading a speech that was written by other people. If I were king and people applauded me, I would be thinking: God Tom you are such a looser when people already get excited when you read a prepared speech!

I am not convinced that all the words put into the mouth of historical figures are very accurate, and could easily give a wrong view on history. I am also not convinced that Churchill told him about his speech impediment. I think the script would have benefited from leaving out a portrayal of Miss Simpson and Churchill.

In terms of the handicap arising from stuttering, the movie did an excellent job. Only a person who stutters/ed like David Seidler could have written such a script.
Colin Firth did a good acting job, though I kind of felt the stuttering came across as a bit fake to me. What I liked most was the first-person experience of giving a speech where everyone listens. I, and I am sure the audience, shared the embarrassment, and were waiting with the king to see when the next word would come out. I had exactly that experience, thus now that I am doing Toastmasters, it's exactly the opposite.

Moreover, I didn't feel intellectually inspired in any way, or did I feel that I now see a new perspective of life. I guess that's probably because I stutter, and I don't learn anything new. I was of course deeply unhappy with the allusions to "many stutterers were forced to change writing hands", "children never stutter when they first speak", and so on. That's all non-sense. OK, you can argue that the movie reflects the spirit of the times. I would have taken those lines out of the script. They don't add to the core dynamics of the movie.

Finally, I really loved the Archbishop's attitude to get a "real professional" to help the king, or the doctor with the pebbles. Did David Seidler take a swipe at the "professionally trained speech therapists" that "helped" him overcome his stuttering. 80 years ago or now, they are not that much different. Few people who stutter didn't waste time being treating by a professional professional. They just do what the time spirit tells them to do with not much further thought. Logue at least tried to do what he empirically found to work, even if his theories were not valid. He is the 1930's version of Bodehammer or Harrison: charismatic, empirically based, but hopelessly crackpot thinking in terms of theory and science.

The movie is not one of my best movies. But for the stuttering community, it's a gift sent by God. The King's Speech will become part of our main-stream culture, and shows what it's like to stutter. The audience left the cinema and were thinking to themselves: God, I am so lucky that I don't stutter.

PRESS RELEASE: Stuttering in Luxembourg

2011-02-02T16:07:00.002+01:00

Together with friends from our informal support group in Luxembourg, I have just sent a press release about The King's Speech and the bad care for people who stutter in Luxembourg. The release went to all media, ministries, and political parties. Here are the documents. (In German, one of the official languages in Luxembourg, apart from Luxembourgish and French)

PRESS-RELEASE

The King’s Speech, der Oscar-nominierte Film über den stotternden König Georg VI

Schlechte Versorgung für stotternde Kinder und Erwachsene in Luxemburg

Am 4. Februar kommt The King’s Speech in die luxemburgischen Kinos. Der Film handelt von der Freundschaft zwischen dem stotternden britischen König Georg VI und seinem Therapeuten Logue. Durch intensives Training gelingt es Georg VI, sein Stottern unter Kontrolle zu bringen, und mit beeindruckenden Reden gegen Nazi-Deutschland das britische Volk zusammenzuschweißen. The King’s Speech wurde 12 mal für einen Oscar nominiert.

Ca 5% aller Kleinkinder durchlaufen eine stotternde Phase, wenn sie Sprechen lernen, und ein Prozent aller Erwachsenen stottern. Stottern ist eine neurologische Störung, die auch vererbt werden kann. Durch temporäre Unfähigkeit, Gedanken in Sprechen zu verwandeln, kann eine starke Sekundärsymptomatik entstehen. Viele leiden zudem unter Sprechangst, Vermeidung von Sprechsituationen, Spott und Diskriminierung auf dem Arbeitsmarkt.

Therapie kann nicht heilen, aber die Symptomatik stark reduzieren. Psychotherapeutische Ansätze können die psychosozialen Folgen des Stotterns verarbeiten. Und intensive Verhaltenstherapie kann das Stottern selbst durch Verlernen von Sekundärsyptomatik oder das Erlernen neuer Sprechmuster mildern. Leider ist die Rückfallquote sehr hoch. Medikamentöse Behandlung wird getestet, aber ohne klare Erfolge. 80% der Kinder hören auch ohne Intervention auf zu stottern. Bei den anderen ermöglicht eine frühe Therapie eine bessere Kontrolle des Stotterns.

Die Therapie sollte nur von erfahrenen Fachtherapeuten durchgeführt werden. Die normale Logopäden-ausbildung oder der Besuch eines Workshops ist völlig unzureichend für diese komplexe Störung. In Luxemburg werden Kinder und Erwachsene trotzdem behandelt, obwohl es keine Stotterexperten gibt.

Wir sind auch enttäuscht über das Desinteresse der Verantwortlichen, die das Potential aller luxemburgischen Therapeuten und eine bessere Versorgung untergraben.

So hat z. B. der Service Audiophonologique 25 Jahre altes fehlerhaftes Infomaterial für Eltern. Trotz anfänglichen Interesses und eines gemeinsamen vierstündigen Meetings ist die Broschüre nach einem Jahr immer noch nicht fertig: Man hat keine Zeit und Wichtigeres zu tun.

Auf unseren Vorschlag, stotternde Jugendliche zusammenzubringen, und sich mit älteren Betroffenen auszutauschen, um sie zu ermutigen, sich selbst zu verwirklichen, wurde vom Centre de Logopedie abgelehnt: Es bestünde kein Bedarf, auch nicht an Infomaterial.

Die ALO, die Association Luxembourgeoise des Orthophonistes, hat im Oktober einen Workshop zum Stottern organisiert. Wir haben die ALO Präsidentin, Frau Medernach, kontaktiert und auf Mängel hingewiesen. Wir wollten einen runden Tisch, damit die Logopäden auch einmal Betroffene kennenlernen. Ihre Antwort: Unsere Email sei „penibel“, und Therapeuten interessierten sich nicht für wissenschaftliche Erkenntnisse. Im Grunde sollten wir sie in Ruhe lassen.

Es gibt keine systematische zentral gesteuerte Budgetierung für Störungen. Mit der Konsequenz, dass nur Projekte für die Störung gemacht werden, wo die Betroffenen am lautesten schreien oder die Verantwortlichen hofieren.

Wir fordern die Minister di Bartolomeo und Delvaux auf, für eine moderne und gleichberechtigte Versorgung aller Störungen zu sorgen, die nicht von dem Willen von Einzelpersonen abhängt.

FÜR JOURNALISTEN:

Bitte kontaktieren Sie uns, wenn Sie eine persönliche Story zum Stottern schreiben oder produzieren wollen. The King’s Speech bietet Ihnen einen guten Aufhänger.

Anliegend drei sehr verschiedene Berichte von Betroffenen, wie das Stottern ihr Leben geprägt hat und wie sie heute damit umgehen. Wir sind in der Lage, Ihnen allen eine andere individuelle Geschichte anzubieten.

Bitte helfen Sie uns, der Bevölkerung das Leben von Betroffenen, das Wissen über das Stottern oder Therapiemöglichkeiten nahezubringen!

Vielen Dank!

PS: Mehr Infomaterial auf bvss.de, begaiement.org, und stammering.org.

Kontaktaddressen von Betroffenen:

Dr. Tom Weidig (Koordinator), 621 432263

Einar Arnarsson

Michèle Schaefer

Colline Colles

Marie-Claire Philippe

Adrien Lorgé

Jerome Herr

Excellent CBS News report on stuttering.

2011-02-01T18:30:00.000+01:00

Check out this excellent CBS NEWS report on stuttering. (Thanks to Nathan for this link!)

Beautiful report where I agree with 100% of what is said, even the science bit. Anne Smith and Weber-Fox are interviewed and they did an excellent job. They are good scientists, and clear science communicators. And note they did not drum up the early-intervention myth of eradicating stuttering with conditioning.

Congratulation! We should give CBS News an award!

Stuttering constant across cultures?

2011-01-31T22:31:00.004+01:00

An interesting comment by a reader on the prevalence of stuttering across cultures.

This subject is very interesting, as big part of speech pathologists believe that stuttering rate is the same everywhere, and only a minor part believe that there are substantial differences in the rate of stuttering in different populations. Those who believe the rate is same everywhere, unfortunately, are not interested in cross-cultural studies. After asking people from different cultural background for many years about stuttering, I found that the differences in the incidence are absolutely huge. For example, you will find that a huge number of people from sub-Saharan populations had a stuttering problems (many have it as adults as well). On the other hand, you can hardly find a stuttering individual among the Chinese, or among Native Americans. Unfortunately, most of the "serious" speech pathologists are not interested to examine these cultural differences, instead they try to explain the published data on the existing differences by different methodologies used by different speech pathologists in different populations. But how come that experts, almost educated in Western Universities, always make the same "mistakes": they exaggerate the number of stutterers in sub-Saharan Africa (and African Americans), and grossly underestimate the number of stutterers among American Indians and Chinese populations. Fearing to face facts has never helped anyone in finding the real causes of any phenomena. I very much hope that many professional speech pathologists will read this blog and comment from their own experience on this topic.

In the past, I wrote that stuttering is relatively constant across cultures. I am not so sure any more. For following reasons:
(a) Stuttering is driven by genetic mutations. Different ethnic groups have different mutations in their gene pool. So some could have more or less of these mutations.

(b) Stuttering might not occur due to certain genes, which again might differ in different gene pools.

I am not surprised that a difference between Sub-Saharan and other groups exists. The latest research on Neanderthal DNA has shown that Sub-Saharan groups do not have any Neanderthal genes. Only those groups getting out of Africa have Neanderthal genes. Moreover, those groups were very likely under severe evolutionary pressures to adapt to different habitats. Speech might have been a critical feature, and mutations have been selected out.

I haven't looked yet at empirical studies, but I would be surprised if such research exists and is water tight.

I revise my statement:

(a) Stuttering exists in all cultures.

(b) Prevalence might vary.

Here is also an older post on the topic.

Crackpot Award for Dr Martin Stephen

2011-01-27T14:32:00.005+01:00

TheStutteringBrain awards Dr Martin Stephen a Crackpot Award for his article in the Independent:

The truth is that a stammer is psychological, not physiological. We're afraid to admit that, because it smacks of mental illness, a worry shown clearly by both partners in the marriage in The King's Speech. It's in the mind, a stammer, and comes from a massive feeling of inadequacy.

Dr Martin Stephen is High Master of St Paul's Boys' School, but he would do good to get outside his intellectual comfort zone: Dr Stephen is an expert on intellectually low demanding subjects like English literature, modern naval history and war poetry. Unfortunately, the world has become more complex and complicated. Science is difficult, but we understand much better the neurobiological and genetic basis of human speech.

He is a terrible example for his students. He should actually do what he probably preaches to his students: THINK BEFORE YOU WRITE, and DO YOUR HOMEWORK!

He clearly has not done his homework. To claim that stuttering is due to a massive feeling of inadequacy is completely wrong. And shows his lack of literature review on the subject.

Check scientific research or even just wikipedia! Or does he feel too sophisticated or intellectually confident in his abilities to look at it?

I know 100s of people who stutter who feel perfectly adequate in all respects except being able to say exactly what they want to say.You only have to talk or know me!

He gets extra points for

Yet I would argue that losing the ability to speak clearly is no less important to the development of a child than the loss of an arm or a leg, or the capacity to see or to hear.

Please leave a comment and counter his non-scientific arguments: here.

Trudy Stewart on treatment/science

2011-01-25T14:19:00.000+01:00

I am disappointed by Trudy Stewart's science part of the Today interview, but I agree with her point that The King's Speech is the first movie to reveal the psychosocial difficulties people who stutter face. But not on the science:

1) There is still no compelling evidence that early intervention is "really really effective.", and that it "prevents stammering going into adulthood". At best, treatment optimizes the psychosocial adaptation to a stuttering brain which might also reduce stuttering. Recovery is very likely a neurobiological process unaffected by treatment.

It's just a wrong hope for parents. They hope for a full recovery, but therapy can at best reduce stuttering and psychosocial maladaptation. And if they fail, they blame it on themselves.

2) I also don't agree with risk factors like family history and part-word repetition helping in treatment. They don't guide us in the method of treatment. They only inform us that some are more likely to keep on stuttering. Every child needs to be treated for what could happen, and not how likely they will stay stuttering? OK. I guess you can make the case that children with no risk factors should be less often monitored.

I would also add that family history could also point to an anti-risk factor. A friend of mine stuttered as a child severely (more than I did apparently), but he recovered fully. And his daughter went through the same process. I strongly suspect that genetics can also point to recovery.

3) The brain imaging has ALSO been on structure which is a more significant finding than just different brain functioning.

King's Speech cast and audience joke and laugh about stuttering

2011-01-21T11:01:00.005+01:00

I just watched a Q&A session on the King's Speech. The main actors and director were talking about the movie in front of an audience of actors, I think. [18:00]

The moderator said that the British Stammering Association liked the realistic portrayal of block. Everyone in the audience laughed at the thought of there being an association about stammering. Then the actress playing the wife of the king, also made some really stupid jokes about stuttering. Like the movie would have taken too long, and so on. Only Colin Firth comes out relatively unscathed, except for a few jokes at the end.

Basically, for most in that audience and panel stuttering is just a funny thing a strange king does. Most have no idea what it feels like to stutter. Stuttering is a matter of laughter. They would have never made the same comments about wheelchairs or blacks. Watch it, and you will feel ridiculed. Transported back in the times when your friends made fun of you.

We are totally drunk about the movie. Finally a movie on stuttering. And we think the actors are so concerned about stutterers. They are not. They did the movie for a good story, and not for us. They do not care about us. We are the poodle of the King's Speech.

Do dopamine levels play a role in stuttering?

2011-01-20T18:49:00.000+01:00

Holger made me aware that a study on Dopamine Function in Developmental Stuttering has recently been closed. The study

will use positron emission tomography (PET) to examine the role of the chemical messenger dopamine in stuttering. It will measure and compare the number of dopamine receptors and the amount of dopamine released in the brains of stutterers with that of normal volunteers. The results may provide information about how drugs that block dopamine's effect might work to enable fluent speech.

Jerry Maguire is quite interested in this area of research since his involvement in a similar experiment in 1997.

I am just concerned because the starting date is 2001. Did it take ten years? And I never heard about it? Maybe the study never materialized. Would be great if someone could check or replicate Jerry's work.

Selecting out embryos with stuttering genes?

2011-01-16T20:16:00.000+01:00

Yesterday, I saw a talk show on German TV on IVF (in vitro fertilisation). The guests discussed whether parents should have the right to select out embryos with genetics disorders. One guest suffers from a genetic disorder causing painful chronic inflammation. He said that he wished his parents had selected him out. And he would scan embryos for the gene defect, and select them out.

Would you have wished that your parents had selected you out for another embryo? Would you scan embryos for stuttering genes and select them, assuming there are unambiguous genes for stuttering?

During my teenage years, my suffering was too much, and I would have wished my parents had selected me out! But now I would say No, also because my embryo not only had stuttering genes, but also genes for writing such an interesting and challenging blog! And I could not possibly spare that experience from the stuttering community! ;-)

In terms of scanning embryos and selecting out "stuttering" embryos, I would say: it depends. If the stuttering is expected to be severe, then yes. If it's mild, then no.

What is your opinion?

Revolutionary mood at BBC call-in

2011-01-10T19:46:00.002+01:00

Check out this emotionally very powerful and liberating BBC radio call-in on stuttering: here. I have never heard so many people stutter on national radio. Especially the stories on how stuttering has affected their lives will change the attitude on stuttering of the listeners forever. There was a sense of revolution in the air: we will speak despite and we will speak out. Big thanks to the BBC and the host who has allowed people who stutter to stutter so publicly. Funnily, the host himself had hesitant speech. He even said that he got into speaking trouble giving a eulogy for a friend who died at his funeral! I mean who wouldn't stutter there!

Just one tiny little point. ;-) The audience kept on talking about handedness, to which Leys Geddes, BSA chair, said that there is no research confirmation. I don't think that gets people's mind changed. I always say: Really? So how come millions who changed hands did not start stuttering. And millions who did not change hands started stuttering. Leys also said that it might have triggered stuttering. I don't buy that either, in the sense that without a change they would not have stuttering. BUT, the audience might be right about their observation. There is one theory that left-handed is due to problems in the development of the embryo. Also, left-handedness has a different brain organisation. So I would speculate that left-handedness might be a moderate risk factor, which coincides with a hand change because only left-handed people had to change hands! So not hand change causes stuttering, but left-handedness causes stuttering and hand change! Subtlety kills the cat (and many others).

And Leys again said: "Early intervention will reduce the number of kids who stutter". I don't buy that either. Let's assume all stuttering is genetic. So how can early intervention EVER reduce the kids who stutter, they always will have their genes. Early intervention can only shape their psychosocial adjustment, but not push the recovery rate into higher territories.

Looking at failure contains information

2011-01-10T08:38:00.002+01:00

I suggested that we should look at failed cases as a quick and cheap way to get a sense for the efficacy of Lidcombe.

You're going to have a biased sample. If you want to determine the effectiveness rate, you'd need to ask for parents of children who've been treated with Lidcombe Program - regardless of their outcome. THEN see how many are still stuttering.
At the moment your methodology is like saying you want to hear from people who've had a recurrence of cancer, after a course of chemotherapy, and concluding that chemotherapy is an ineffective treatment.

Bias is not an issue, because I don't look at the global population.

If the people die or relapse after chemotherapy, it says something after the chemotherapy. And the more stories I hear, the more concerning. I never hear that someone dies of a nose job or appendix removed. There IS information is that information.

If Lidcombe is 100% effective, no kid will be stuttering any more. So if I find someone or a few, Lidcombe cannot be 100% effective.

Someone once commented, I think it was Peter Reitzes, that the adult stutterers are going to die out in Australia! We shouldn't have any stuttering teenagers any more.

Moreover, we can look at those cases, and look whether they are normal cases, i.e. parents were following instructions, and therapist was well-trained. If we have such cases who fail, we seriously need to ask whether it is effective.

I am just saying it's a cheap way to do proper research. Find and look at the failure. Therapist researchers mostly do research on what is successful.

Moreover, if I find 10 failed cases, I should have at least 90 successful cases. We then have a success rate of 90%, which is a bit above natural recovery.

Predictions for 2011

2011-01-09T14:24:00.002+01:00

I spoke with Peter from StutterTalk about our predictions for 2011. Here they are:

The King's Speech will alter public discourse:

The movie will put the spotlight on stuttering, and do more in terms of public discourse on stuttering than the last decades together. Stuttering will not be seen less as a matter of laugher, and more as a medical condition. This greater exposure might well lead to more funding for research or charities active in the field.

No difference between Lidcombe and Demands&Capacity treatment from Dutch study:

I had this on my list for last year, and according to my calculation the data is ready but not completely analysed and still private. In May 2009, the group had 106 kids enlisted for the trial. So by December 2010, these kids would have started treatment at least 18 months ago. So they already have DOUBLE the amount of kids with one-year after treatment data than as the Lidcombe study. Preliminary results should be there with a decent if impressive sample size.

But the whole publication is slowed done by the time it takes to analyse all the speech data (a complete nightmare if you ask a theorist like myself!), and by their obsession to have the complete sample (190 kids) done. Just think about it. Many groups publish with lousy 10, 20, or 50 kids, aka the Lidcombe group, and the Dutch group is too conscioutious and wait, effectively leaving us exposed to the weak but only research out there.

That reminds me of the saying: Good girls go to heaven, bad girls go everywhere! (or propagate the efficacy of their treatment with evidence-based practise with lousy sample size.)

So my prediction is like last year, that there is no difference. But they might not even publish in 2011. The data is there but maybe not for all 190 kids. But hey even 51 would be more than Lidcombe. I just hope that their group will keep up the efforts. I have seen many projects implode like the PEVOS project.

Pagoclone will be stopped for good and more information on the placebo group

It's not really a prediction, because the trial has been stopped. I guess the prediction or hope is that they publish the data of the study. I hope it won't take ages. And if a editor refuses because it's a null result, he/she should go to hell! As I said before, I want to see the placebo group, how much did they improve? If there is no measurement bias, the improvement should be low or zero. One open question is whether a subgroup have benefited, but even there I am not so sure.

Not much on genetics and neuro-imaging unless new technology

I am not sure much will happen in 2011, unless a new technology like MEEG will emerge. Genetics might find more genes. That's difficult to predict. But fundamentally, I don't think the neuro-imagers are going to have a breakthrough, because more theoretical work is needed.

So what are your predictions?

Is your kid still stuttering after Lidcombe?

2011-01-06T08:48:00.000+01:00

I want to hear from parents and clinicians who treated their child with Lidcombe and the child is still stuttering. Only a few cases are enough to show that Lidcombe is not highly effective, because they will immediately drag a perfect 100% recovery down kid by kid and it's not far to go until 80% natural recovery. Researchers should search for those kids, because this trial does not need as many participants to get to statistical significance.

Here is one kid I found on STUTT-L:

We did not have a strongly positive experience with the Lidcombe, but did try it for several months with my little boy, Steven, who had just turned 4 (he's now 4 1/2). Our little boy seemed to do well with it for about the first 6 weeks, but then after that began prolongations, blocking, and ingressive breathing. I knew those were not good signs, but did not get any assistance from Steven's clinician when I requested 'tools' to help him with these struggles. I have come away thinking Lidcombe is possibly helpful for children with mild stuttering.
Anyway, our clinician calculated the %'s and we did one rating for a full 24 hours. We just averaged his score---meaning we considered the best and then also the worst scores for the 24 hours.
We have many mixed feelings about Lidcombe (as I think many other parents and clinicians do, too). We are now pursuing a more traditional approach--would be happy to talk with you more about it if you would like.

Become a follower

2011-01-06T08:45:00.001+01:00

Become a follower to my blog. Simply click on the FOLLOW button in the top right of the border section, and you can sign in with an existing account, or create one. You can also use this account to leave comments with a name.

The outing of the stuttering king

2011-01-05T09:37:00.002+01:00

In the King's Speech, the king has been outed against his will, and certainly against that of his wife, the Queen Mother. Much like in the gay community in the Eighties and Nineties, the outing and coming out of prominent figures will lead to a seismic shift not only in the public perception but also in the self-perception of the affected individuals. Ironically, stuttering is blatantly obvious when most stutterers speak, but it's hidden in that it's not talked about.

The movie will have a dramatic impact on stuttering world-wide. Not because of the realistic portrayal of stuttering, but mostly because The King Stuttered.

1) Stuttering is now acceptable. Many influential people did not come out publicly about stuttering. But now even the king stutters, so it's OK for them to say: I am like the king. I have the same issue as the king. Like the king, I overcame obstacles and this made me a stronger person. Check out Sandra Howard's coming out. She is the wife of the ex-leader of the British Conservatives.

2) "Ordinary" people will also come out, or be asked to admit to stuttering. If the king stutters, you are a bit like the king! Many will be proud to be like the king. Don't know why, but they will!

3) Celebrity, especially royal one, sells.Many journalists have to write articles about the movie, which makes them more informed about stuttering.

4) You cannot make fun of stuttering any more, at least not in the UK. Making fun of stuttering means making fun of the king! And making fun of the king is the high treason to the Empire! Onto the gallows of London Bridge!

5) Many journalists are completely clueless about the nature of stuttering, and most of them are copycats, also due to the time pressure they are under. So they will copy from earlier articles and re-shuffle. Luckily, I noticed that most are taking the neurobiological cause, and mostly the there-is-no-cure phrase. Ironically, we experienced the same as in the last century. There is a prevailing theme of the cause, and the journalists just swallow it. Luckily, this time they swallow the "true" one. I take some responsibility due to my lobbying hard for a neurobiological cause over the last ten years at conferences and on this blog. I remember that ten years ago, "neurobiological cause" was a bit of a taboo word. Now of course, I am a bit scared that the social, behavioural and cognitive aspects are lost in the debate.

6) I expect much more funding for the stuttering associations and research. But I fear that the real grass-root consumer associations like the BSA or the NSA will receive little money, unlike the well-connected organizations like the American Institute of Stuttering or the Michael Palin Center.

7) Parents will be less concerned about the future of their kids. Well, even the king managed to live with stuttering. It's not the end of all times.

Finally, I expect that these effects will impact on the well-being of those who stutter. They will have less emotional reactions like fear, shame, and embarassement, because even the king stuttered. But of course, they will still stutter.

Pagoclone trial ends beginning of January

2011-01-02T09:12:00.001+01:00

A reader gives us some more insight into the end of the Pagoclone trials. His report confirms what we know. The trial has ended for most, and the few showing some success continued taking the compound. The company probably wants to see whether their effect is waning, or stays stable. I have always said that some of the success could be due to statistical fluctuations (the trial coincided with an up-swing of fluency) plus measurement bias and possibly a long-term placebo. Those extra months for the successful groups should clarify my hypothesis. My prognosis: some will loose those effect. But to be strict, one would really need to create two groups: the successful one with no continuation and the successful one with open-label to discount for further placebo.

Here is the report:

Hi Tom,
I participated in Pagoclone study in NJ which concluded for me in October,10. When I enrolled in the study, I was told that I'd be compensated for my time and travel by getting paid $50/visit. I made around 10-12 visits and was told that I was sent a check at the conclusion of the study. When I Inquired about my compensation at the end of the study, I was told that study is still on-going for some of the participants and it'd conclude in December. I again asked about it the last week and now the center where I went for trial, gave me a date of January,11 citing the reason that the study is still going on. This is frustrating to say the least.I believe the study/trial has concluded for everybody. They have to compensate me as they promised. I'm not sure if this delaying tactic is at the part of Pagoclone or the center where I was enrolled in the trial.
Can you post this letter anonymously on your forum and put the question in front of your readers if any body else is also encountering this situation of is there a way I could contact Pagoclone myself.

Oxford Dysfluency Conference on September 1-4th 2011

2011-01-01T20:02:00.001+01:00

The Oxford Dysfluency Conference is from September 1-4th 2011. I have been to the last three conference, I think. The setting is very nice, the historic university town of Oxford. The conference is also OK, with the usual ups and downs. Don't expect a true scientific conference. For many years, it was the only conference on stuttering apart from the ISA and IFA conferences. They have been organized by Dave Rowley, a loyal TheStutteringBrain reader from de Mountfort University.

Unfortunately, he has given the responsibility of the many conference admin shores to Elsevier, the leading academic publisher. As a result, the prices have gone up dramatically, and I am sure many are going to ask themselves whether it's worth the money: £595 + 20% VAT. British institutions can probably claim VAT back, but the lonely therapist cannot not can overseas attendants, I would guess. As Elsevier is not able to provide the full price on their website. I have done the *very* difficult calculation: 714£. Plus travelling expenses, and you have to count 800£ for British, 900£ for continental European, and over 1000£ for
overseas. Needless to say that only the wealthy country can attend.

I have asked for a reduced fee in exchange for a sponsored link on my blog. So far every conference has agreed, but I am not so sure about Elsevier. But even the reduced student fee is 475% plus travelling. That's one week holidays.

If you plan to go or find it too expensive, you should also consider the BSA conference held a week later in Durham. I know Durham well, because I have done my PhD there. Beautiful historical city, probably the most impressive setting of ALL towns in England. Especially, in snow on a gloomy late afternoon. I probably should attend. And fifteen minutes up North is Newcastle. A real party town on Friday night. Not be missed: the Geordie girl. Some years earlier, I organized some research symposiums at the BSA conference. Maybe Durham would be a good and cheap place to repeat. The only downside of Durham is that it is so damn hard to get, too. It's a real pain. You have to take the train.

Here are some more details of the Oxford Conference.

The 9th Oxford Dysfluency Conference is one of the leading international conferences in the field of stuttering/stammering. It brings together researchers, practitioners and clinicians across a range of disciplines most notably speech and language therapy, along with psychology and linguistics. The Oxford Dysfluency Conference provides an opportunity for researchers to hear about the latest work in disorders of fluency and will enable clinicians to update their professional skills.

In 2011, the goal of the Oxford Dysfluency Conference is to lead a challenging international debate about the latest research in disorders of fluency and its clinical applications. The 2011 conference will:

* Present the latest research developments and findings
* Explore issues relating to the nature of stuttering and its treatment
* Develop knowledge and clinical skills working with children and adults who stutter
* Consider ways to integrate research into clinical practice
* Support and encourage new researchers in the field
* Develop collaborations with researchers working in dysfluency
* Provide informal opportunities to meet and discuss ideas with leading experts in the field in a friendly environment
* Advance research in the field of dysfluency

Topics List

Abstracts are invited on the following conference themes:

* Commonalities - commonalities across therapies, disorders or perspectives
* Evidence Based Practice - empirical research evidence; integrating research into clinical practice; measuring outcome; practice based evidence
* Dysfluency: The wider context - concomitant disorders; covert aspects of stuttering; environmental factors; cluttering
* Integrating theories and therapies - application of counseling approaches such as CBT, SFBT to stuttering; application of theories; how theory informs therapy
* Neurophysiology - aetiological complexity; brain imaging; brain function; motor function; implications for interventions
* Health Service Issues - coping with health service changes; value for money; telehealth; service delivery models.

Onslow on The King's Speech

2011-01-01T12:01:00.000+01:00

Mark Onslow spoke reasonably about The King's Speech. He even managed not to mention Lidcombe, but claims that nowadays we know exactly what to do with adults and children who stutter. I am not so sure, but such claims obviously bolster the political capital of the speech and language therapist establishment. And he says that not minimizing stuttering at a young age creates terrible problems. I guess I would agree, but this statement also backfires in that by judging stuttering as a terrible problem he thereby creates part of the handicap experienced by people who stutter. No problem, no work?

But one mistake. He claims that Newton stuttered. This myth is just not dying out. I should create an award price. Five hundred for the person who proves to me that Newton stuttered!

On The King's Speech from a journalism student who stutters

2010-12-31T17:54:00.001+01:00

Check out ‘The King’s Speech’: A Stutterer’s Reflection by Adam Polaski, a junior journalism major at Ithaca College.

We must get a text scroll into The King's Speech

2010-12-28T18:44:00.006+01:00

That's what we are all afraid of, from Pam's facebook post:

A co-worker just came to me. She: "I saw The King's Speech last night". Me: "how did you like it?" She: "people may come away with wrong ideas, like my husband. He thought it was an emotional problem. I corrected him. Maybe there needs to be a dialogue about the myths".

Actually, I have a brilliant brilliant idea. We should lobby the producers to include a text scroll down on stuttering after the movie.

Three very simple messages STRAIGHT INTO THE MINDS OF MILLIONS!

Stuttering affects 5% of all children and 1% of all adults across all cultures.

Most stuttering has a genetic or neurological origin, and gets accentuated by strong emotions, stress, and mood.

There is no cure but good treatment reduces frequency and severity of stuttering, avoidance of speaking, emotional suffering, and improves self-esteem.

Of course, I am an idiot. I should have come up with this idea months ago! It might not be possible any more. Maybe for the DVD or foreign language release.

In any case, write to your association with the request!

Peter and Nan on Lidcombe at StutterTalk

2010-12-27T10:43:00.001+01:00

The Larry Kings of stuttering discussed Lidcombe's academic claim of treatment success, i.e. the Emperor's New Clothes. When I say to the king: "Wake up! You are naked", they would say: "My Lord you might want to consider the possibility that other people have more clothes on than your Highness."

They made many important points that are frightfully close to the ones I made on my blog. ;-) Therapists should definitely listen to the podcast. Nan made the interesting point that the Lidcombe group needs to publish a lot to get funding. I'll get back to this points in relation to the wwwikileaks documents in a future post.

Here are a few extra comments on their debate:

Taking a theoretical perspective bypasses all this esoteric debate on statistics and empirical data: Stuttering starts due to a neurobiological cause due to either genetics and/or developmental issues. So the questions become: Can operand conditioning undo the neurobiological cause? How does natural recovery undo the neurobiological cause? My answer to the second question is: the neurobiological cause is just temporary, e.g. different development schedule. I would answer the first question with a moderate NO. Brain plasticity is a myth. Sure, targeted practise can increase or decrease the brain resources used, and optimizing occurs. But operand conditioning is about learning, which means changing memory to have new behaviour. Kids can speak more fluently, and the conditioning tells the brain to use this behaviour. It does not work on the general structure of the brain.

It can change your behaviours but not the neurobiological cause. So I would expect kids who undergo Lidcombe to change their behaviours and decrease stuttering behaviours with a better control over stuttering moments. But the neurobiology is not affected. Either the brain naturally recovers or the brain stays. If it stays, the critical question is whether the kids who have shaped their behaviours via operand conditioning relapse or not. But it is clear to me that the neurobiological cause is not going away.
Nan Ratner needs to decide whether she wants "1000 kids to get decent statistics" or claims that there is some evidence for success. How do the two square up?
They did not talk about the children's version of relapse after stuttering therapy. Rightfully, the dogma states that the majority of adult patients relapse after therapy. It is the norm and not the exception. But I rarely hear people talk about it for Lidcombe. We should expect that a treatment with operand conditioning to be very vulnerable to relapse. Why? Because the cause that led to maladaptive behaviours is still present, because the neurobiological cause is still there. This cause leads to temporary speech initiation delays, which lead to reactions which leads to learning.
Peter made the interesting point that decades ago parents were blamed for the stuttering of their kids and now some within Lidcombe blame parents for not properly implementing the treatment. In a sense Mark Onslow is right, with perfect parents you can probably keep shaping the behaviour in such a way that stuttering is minimal. But we do not live in a perfect world. Parents loose influence once kids go to school.

Book on choral singing and stuttering.

2010-12-26T09:56:00.000+01:00

I found a wikipedia entry for Who Asked the First Question? The Origins of Human Choral Singing, Intelligence, Language and Speech, a book authored by Joseph Jordania, a ethnomusicologist and evolutionary musicologis. Part of the book deals with stuttering:

Cross-cultural studies of stuttering and dyslexia
Cross-cultural studies of the stuttering prevalence is widely discussed in the book. It is claimed that there is a positive correlation between the presence of choral singing traditions and the higher prevalence of stuttering in a population. The book surveys the existing literature on the cross-cultural study of stuttering and it is suggested that on one hand European and particularly Sub-Saharan African populations have higher stuttering prevalence, and on another hand Native American, Australian Aboriginal and East Asian populations have much lower stuttering prevalence. Cross-cultural studies were very active in early and middle of the 20th century, particularly under the influence of the works of Wendell Johnson, who claimed that the onset of stuttering was connected to the cultural expectations and the pressure put on young children by anxious parents. Johnson claimed there were cultures where stuttering, and even the word "stutterer", were absent (for example, among some tribes of Native Americans). Later studies found that this claim was not supported by the facts, so the influence of cultural factors in stuttering research declined. It is generally accepted by contemporary scholars that stuttering is present in every culture and in every race, although the attitude towards the actual prevalence differs. Some believe stuttering occurs in all cultures and races at similar rates, about 1% of general population (and is about 5% among young children) all around the world. A US-based study indicated that there were no racial or ethnic differences in the incidence of stuttering in preschool children.^[3]^[4] At the same time, there are cross-cultural studies indicating that the difference between cultures may exist. For example, summarizing prevalence studies, E. Cooper and C. Cooper conclude: “On the basis of the data currently available, it appears the prevalence of fluency disorders varies among the cultures of the world, with some indications that the prevalence of fluency disorders labeled as stuttering is higher among black populations than white or Asian populations” ^[5]
Different regions of the world are researched very unevenly. Understandably, the largest number of studies had been conducted in European countries and in North America, where the experts agree on the mean estimate to be about 1% of the general population (Bloodtein, 1995. A Handbook on Stuttering). African populations, particularly from West Africa, might have the highest stuttering prevalence in the world—reaching in some populations 5%, 6% and even over 9%.^[6] Many regions of the world are not researched sufficiently, and for some major regions there are no prevalence studies at all (for example, in China). Some claim the reason for this might be a lower incidence in general population in China.^[7] Jordania suggested that the differences in stuttering prevalence may have a genetic basis

The Christmas miracle of Mr Tim

2010-12-23T17:07:00.000+01:00

I wish you all Happy Xmas and a Happy New Year!

Check out the Xmas miracle! (tip from a reader)

WWWikileaks: Who has written the PhD thesis?

2010-12-13T22:20:00.009+01:00

A few months ago, I received wikileaks-quality documents with the request that I should make the documents public. I have been hesitating ever since, but wikileaks has lowered my threshold. People who stutter and unaffected academics should know what issues exist in the stuttering research academia. So I am starting wwwikileaks.

The documents shed an interesting light on an unreported and rarely discussed aspect of the academic world of stuttering, namely the quality of the training of PhD students.

Remember the presented documents are only one aspect of an actual event that has happened (or it is a very convincing and mischievous forgery).

Why should we not know? If everything is to acceptable academic standards, the people mentioned in the documents should be comfortable with their actions and its release.

The leaker sent me scanned documents which, according to the leaker, led her to come to the following conclusion:

X, who also completed her PhD via Ann Packman and Mark Onslow, presented written work as part of her thesis, which was actually written by Ann Packman - with no acknowledgement. All three of X's supervisors knew about this. see attached abstract from X's thesis and emailed "template" from Ann.

She then asked for an investigation regarding her conclusions:

I did ask for this to be investigated but the response was not a surprise - "It is not unusual for a supervisor to communicate their perspective to the student on the abstract being prepared for a theses. Nor is it unusual for a student to incorporate some of this perspective into their abstract. It would be surprising at this late stage of thesis preparation if there was not substantial agreement between the student and supervisor."

I did respond that there was a huge difference between the supervisor "communicating their perspective" and a supervisor writing the abstract which the student then edited slightly and submitted as part of her "original" thesis.

Here are the documents, so you can judge for yourself. I have blackened out the name of the PhD student, because the specific student does not seem to be relevant to the leaking.

I will only comment in a later post, and not bias your interpretation. And I of course accept counter-documents or comments from below-mentioned persons.

Here is the actual abstract of the PhD thesis to compare with

Research Symposium at NSA in July2011

2010-12-10T10:17:00.003+01:00

A reader has pointed me to the up-coming research symposium at the NSA conference beginning of July.

Here is a list of the speakers:

Gayle Beck, Ph.D. – University of Memphis (keynote speaker)
Deryk S. Beal, Ph.D – Boston University
Courtney Byrd, Ph.D. – University of Texas
Dennis Drayna, Ph.D. – National Institutes of Health
Jennifer Kleinow, Ph.D. – LaSalle University
Gerald A. Maguire, M.D. – University of California, Irvine School of Medicine
Walt Manning, Ph.D. – University of Memphis
Laura Plexico, Ph.D. – Auburn University
Nan Bernstein Ratner, Ed.D. - University of Maryland
Jennifer Watson, Ph.D – Texas Christian University
Mandy Hampton Wray, M.S. (doctoral candidate) - Purdue University
Scott Yaruss, Ph.D. – University of Pittsburgh

I know a few of them. I have never heard of others. The key speaker seems to be a psychotherapist. Ask yourself why these have been invited but not others? How do we know that these are the brains? Or are they just the best adapters conforming to the US academic landscape? For example, I would bet that Mandy who is a doctoral candidate and who I don't know is on the list because she has some relationship with the organizers. Just a guess. Not saying she is bad, but there are so many doctoral candidates.

My first impression is that each is speaking about their own research. I hope they have a structure in place for cross-disciplinary debates.

The reader also asked whether I will be there. The answer is: NO. I don't know the organizers which is nearly a requirement if you want to be invited as an non-academic. They probably consider me a kind of crackpot or eager amateur until they debate with me. And they want to keep the quality level high. Second, from those academics who know me, some don't want to have me, because I ask lots of annoying questions and commit faux-pas. Some don't want to have me, because I have publicly criticized their work. Some don't want me, because I have not behaved as they wish I should have behaved and so don't want to support an invitation.

Whenever stuttering drags you down..

2010-12-06T15:36:00.003+01:00

Apologies to John Harrison for deleting his comments

2010-12-05T17:30:00.001+01:00

My apologies to John Harrison, and possibly others. Your comments went into my Spam Comments folder, and, instead of Not Spam, I hit the Delete button! I have moderation on for comments on posts older than 15 days, and comments with links sometimes go into the spam folder. And only check them from time to time.

I only briefly read through his defence of Bodenhamer, and would be happy to respond.

Can you please repost? Sorry, I know it was a rather long comment.

Bodenhamer is probaby a creationist!

2010-12-03T22:46:00.009+01:00

I have been taken to task by several people, the followers of Bodenhamer and people who agree with my arguments, with me mixing in religion. Some even talk about an ad ad hominem attack.

First of all, I have not committed an ad ad hominem fallacy, because I did not say that Bodehamer's statements on stuttering are wrong because he is what he is. I actually presented counterarguments.

Second, I have started to move from looking at his arguments to the person himself. I mention religion, because I want to understand his and his follower's inability to engage in an intellectual debate, and actually change their views based on arguments and empirical facts. And, he reminded me of the mindset I have experienced in my personal talks with creationists some months ago. He and they exhibit religious beliefs.

And guess what! Bob Bodenhamer is mostly likely a creationist, and he certainly works for such a church. He writes in his biography:

Dr. Bodenhamer has served four Southern Baptist churches as pastor. He is presently serving as pastor of a mission church called Christ Fellowship Community Church. His time in the pastorate spans 44 years.

Southern Baptist is infamous for its inability to absorb scientific knowledge and rationality into religion, unlike the Catholic or European Protestant churches. So I found a FAQ on creation on the website of Christ Fellowship Community (note he is pastor in a small church in North Carolina). And here is what they write:

If one takes the Bible at face value, Genesis 1:1-31 seems to suggest that God created everything in six literal days. There is no reason to think that a being as great as God could not accomplish such a feat within this time frame.

People need to know where Bodenhamer comes from. He can believe what he wants to believe. But people, and the BSA who invite him for conference calls, need to understand that they cannot trust him to change his views based on science. In fact, he is an enemy to science.

Hit a hornet nest

2010-11-28T22:23:00.007+01:00

I seem to have hit on a hornet nest, as they swarm out for a few attacks in defence of Bodehamer:

To denigrate the work of someone who has such success because you don't agree with it, is both unkind and unprofessional, and only contributes to the tension in the stuttering community at large.

(a) I denigrate his statements on the causes of stuttering, because he does not change them in the face of obvious and clear evidence to the contrary.
(b) I do not denigrate his desire to help and do not say that he has not helped some people.
(c) not "I" don't agree, but a lot of scientific articles and researchers don't agree with him.
(d) What is professional? To stay silent on the scientific non-sense he is propagating?
(e) What you can call "tension" is what I call an open intellectual debate with the demand for consistency with established science.

His views are religious. He and his followers want to believe, and arrange their world view around. Why does Bodenhamer not change his views despite clear empirical and theoretical arguments? Because he has the mind set of a believer of an unenlightened type. Maybe we should also ask Bob Bodenhamer whether he believes the earth was created a few thousand years ago? Does he deny evolution? Does he believe in a personal God that actively intervenes in our life and is not just a creator?

Given his state of mind on stuttering, I would not be surprised if he ignores empirical evidence here, too.

Bodenhamer: Second reply

2010-11-27T17:04:00.000+01:00

I have come to the conclusion that he communicates and thinks in a style that is optimized for creating growth and positive change for stutterers, rather than in a style that is optimized for academic discourse or even "truth", whatever that is. As someone with an engineering degree from an Ivy League school I know what academics consider "truth", but I reject the idea that it is the be all and end all for advancing the lives of stutterers.

You are constructing a straw man here, because I never said that it is the be all and end all for advancing the lives of stutterers. I have explicitly criticised his causal theories on stuttering. I have nothing against him creating growth and positive change for stutterers. You can do this without knowing anything about stuttering.

Bodenhamer is the one who claims truth. In his website, he tells people what stuttering is about, and he deserves to be de-constructed for his arrogant way of writing about the causes of stuttering.

When he says that genetics are not involved, he is concerned with the realm of future possibilities, rather than the realm of what has been set in the past. In that realm I believe that he is largely correct. Genetics plays little role in determining what an appropriate response to stuttering is for adults. Genetics doesn't help much right now with overcoming the life issues that stutterers face. So in that sense Bob is correct

But he was talking about the causes of stuttering. Genetics is not involved in easing stuttering and its handicap, except in the indirect sense that some subtypes of stuttering might have a better chance for controlling their stuttering due to their special genes, either in terms of neurobiological abnormality or in terms of temperament to go through therapy.

I happen to strongly disagree with Bob about genetics in an academic discourse sort of way, believing that my stutter (and those of many other PWS but perhaps not Bob or John H) is largely driven by my genetically determined neurological makeup, so I tend to agree with the content but not the tone of this post.

But why does he not simply remain silent on areas he does not understand? That is what I am critical about. He should be more modest, and stick to what he might well be good at. To help people modulate their symptoms and give them a better perspective. He is open prey to me, the second he talks about causes. That is what science is about.

I feel that the word babble is unnecessarily demeaning for a man who generously freely gives his time and effort in genuine and effective support, helping people who stutter become self actualized.

Unfortunately, babble is the right word for what he is doing. He is babbling about causes. An action should be judged by the consequences on people and not on whether the action was of good intention. There are also many healers who want the best for their cancer patients, but they effectively murdered their patients who withdrew from conventional treatment. Another question is whether he is being paid for it for his time and effort.

My message is loud and clear: I will attack his message from until he either deleted his causal theories or puts them in sync with common understanding.