Abnormal auditory system in people who stutter?

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.

THE KING'S SPEECH

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?

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.

The King's Speech review

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.

PRESS RELEASE: Stuttering in Luxembourg

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.

Excellent CBS News report on stuttering.

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?

 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:

Crackpot Award for Dr Martin Stephen

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

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

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?

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?

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

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

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

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?

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.

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The outing of the stuttering king

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!

Pagoclone trial ends beginning of January

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

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

Onslow on The King's Speech

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

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

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

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.

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

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?

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:

Research Symposium at NSA in July2011

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..

Apologies to John Harrison for deleting his comments

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!

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

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

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: First reply

 Several readers have left comments to which I would like to reply:

Explain to me why some people stutter on the same set of words in some situations and are fluent in others.

 It is not relevant whether I can give an explanation or not. I say that his statements are wrong, and I give evidence from brain imaging and genetics. You have not disproved my arguments.

Even though my explanation is not relevant to the debate, I will give it nevertheless. There is a neurobiological instability in the brain of people who stutter, unlike in fluent brains. This makes the speech system very sensitive to breakdowns at high demands. My theory is that

(a) some situations are more demanding that others. Maybe the person had a bad day, more stress, is ill, or just feels anxiety in the current situations. Moreover, in some situations our brain is much busier formulating our message and filtering out stuff.

All these things modulate the capacity of the sensitive speech system, and leads to block.

Pagoclone rumours

Here are good old rumours:

The Pagoclone study ended and they did not continue the study. They will be making a decision in December, I think, whether there was enough benefit to a sub-group of the trial study (meaning there was not a benefit to everyone in the study but definite benefit to some)  to justify continuing on with the drug.  My trial administrator in Atlanta said he saw definite benefit to a sub-group and he is still positive on the drug.

Please support Beth's research project!

Beth Harris asks for your support:

I’m a 4th year speech and language therapy student from De Montfort University, Leicester, UK. I’m doing research for my final year project on how often stuttering occurs alongside abnormal involuntary movements. Due to your position within the stuttering community, I was wondering if you could post a link?

The questionnaire has been granted ethical approval by the ethics committee at my University. Everything is anonymous and takes only five minutes to fill out.

This is the questionnaire.

Deconstructing Bodenhamer

The NLP stuttering guru Bob Bodenhamer writes on his website:

The cause: There could be several causes for blocking including genetic predispositions and/or developmental problems. However, our concern is not primarily about the first cause of blocking. Our concern is with what has continued the behavior. We believe that it is the meanings placed around those early experiences of struggling to speak that have become well learned which continues the behavior. This explains how most children grow out of stuttering while some don't - it is about the meanings that the child placed around the behavior. The question then becomes: was it "OK" for the child to stutter some or was it pointed out as unacceptable behavior? Click on the link "How It Works" for many articles depicting our beliefs about blocking as well as those of others.

He has completely misunderstood the nature of stuttering, and he keeps on spreading his pseudo-scientific babble. Had he actually read through several text books, he would realize his arrogant confidence and naivety on causes. So let me explain to him what is actually going on.

There could be several causes for blocking including genetic predispositions and/or developmental problems. However, our concern is not primarily about the first cause of blocking. Our concern is with what has continued the behavior.

He seems to be of the opinion that genetics or developmental problems are causing the first blocking and then magically disappear. That is clearly not the case as brain imaging studies show. Moreover, mutations in genes are present in the body until death. There is a neurobiological basis that is present in all adults who stutter. What has continued the behaviour is the neurobiological basis due to genetics or unresolved developmental issues.

We believe that it is the meanings placed around those early experiences of struggling to speak that have become well learned which continues the behavior. This explains how most children grow out of stuttering while some don't - it is about the meanings that the child placed around the behavior.

That is complete non-sense. For example, more girls than boys recover. Is he therefore saying that more girls recover because they place LESS meaning on blocks? That is just ridiculous. If anything, I would expect girls to be more susceptible to social pressure.

He falls into the fallacy that a theory that makes sense is actually true.

Here is what he should write. Stuttering has a neurobiological basis due to genetics and/or neurological developmental issues. On top of this, every person who stutters has a psychosocial adaptation to this neurobiological propensity to block. I am offering advice on how to change psychosocial maladaptation, which can reduce psychosocial stress and by consequence also reduce the severity and frequency of stuttering.

Yet more evidence for strong heritability from twin studies

Fagnani, Fibiger, and al. have just published a twin study using a database of over thirty thousand twins. Their findings are consistent with past twin study results (see on old post of mine on the Dworzynski study). They find a high heritability of 80%, and only moderate unique environmental effects. Note that they do not mention shared environmental effects.

This finding fits my view on stuttering. Genetics drives the onset of stuttering in many people. The other factors (alone or in combination with genetics) are internal developmental issues caused by unique environmental events like neurological incident, virus and head trauma. Only some of these events were reported in the twin study, so the effort is measured as moderate. Needless to say that, as in many other conditions, the social environment plays a negligible role in the actual onset.

Here is the abstract:

Heritability and environmental effects for self-reported periods with stuttering: A twin study from Denmark.

Fagnani C, Fibiger S, Skytthe A, Hjelmborg JV.

National Centre for Epidemiology, Surveillance and Health Promotion, National Institute of Health, Rome, Italy.

Abstract

Abstract Genetic influence for stuttering was studied based on adult self-reporting. Using nation-wide questionnaire answers from 33,317 Danish twins, a univariate biometric analysis based on the liability threshold model was performed in order to estimate the heritability of stuttering. The self-reported incidences for stuttering were from less than 4% for females to near 9% for males. Both probandwise concordance rate and tetrachoric correlation were substantially higher for monozygotic compared to dizygotic pairs, indicating substantial genetic influence on individual liability. Univariate biometric analyses showed that additive genetic and unique environmental factors best explained the observed concordance patterns. Heritability estimates for males/females were 0.84/0.81. Moderate unique environmental effects were also found.

Had I participated in the Pagaclone trial

Over the last months, I felt that my fluency has improved. I recently realized that had I participated in the Pagoclone trials, I would be written:

Hey guys, I took part in the trial months ago, and I noticed that my fluency has improved. Pagoclone is definitely working for me. I think you should try it out. But of course I am not saying that it works for all.

Workshop on Brain Speech Processes

The Society for Neurosciences organized a workshop on COMMUNICATION ENGAGES COMPLEX BRAIN CIRCUITRY AND PROCESSES: see pdf file.

Research released today shows that:

• The network of brain connections vital to understanding language is more extensive than previously thought. Researchers identified new speech-related pathways by mapping language areas in the brains of people with and without language difficulties (Nina Dronkers, PhD, abstract 837.13, see attached summary).

• People who stutter show abnormal brain activity even when reading or listening, which suggests stuttering is due to problems in speech processing, not just production (Kate Watkins, PhD, abstract 563.19, see attached summary).

• People process words spoken in their native accent differently compared with other accents, which may explain perceived communication difficulties and social inferences attributed to foreign accents (Patricia Bestelmeyer, PhD, abstract 169.13, see attached summary).

• Men who stutter show different brain connections than women who stutter. These findings may help explain why five times more adult men stutter than women (Soo-Eun Chang, PhD, abstract 790.9, see attached summary).

(Thanks to Oliver for the link.)

Note: the Society is a great organisation and publishes a primer on neuroscience key concepts and a booklet on neuroscience.

Participate in research project

A student needs participants for his project on Adults Impressions of Private Therapy for Stammering

I am a final year undergraduate student studying speech and language therapy at DeMontfort university, Leicester UK. I have put together a small website www.researchstammering.com, so that I may collect information from adults who stammer, on the types of private therapy that they have undertaken from the age of 18 years. ....

The research is conducted through a questionnaire that should take no longer than 15mins to complete. It can be accessed at: -

Questionnaire: www.researchstammering.com/questionnaire.html

Emily Blunt: Fluency is a goal for everyone?

StutterTalk, and especially Eric, were really excited by their latest guest, movie actress Emily Blunt.

First, she really did stutter when she was a young teenager. All her comments and descriptions are very realistic, and shared by many people who stutter. So she does understand us who are still stuttering.

Second, she tells the story on her being saved from stuttering due to acting, but what she really means is that stuttering waned at the same time that acting happened.

Don't understand the critique

A new blog Stutter-Mind writes on stuttering focussing on medication

The most vociferous critics of fluency drug testing (e.g., The Stuttering Brain blog; Roger Ingham, Journal of Clinical Psychopharmacology, October, 2010) rely heavily on the placebo argument to bolster their beliefs and prejudices--namely that individuals respond favorably to a particular drug not because of its therapeutic efficacy but rather through a placebo effect. And, according to them, this effect might be short lived. Since stuttering is basically a mind-body problem, and the mind

Pagoclone is dead, long live Asenapine?

Ora and Holger sent me this very recent interview with Jerry Maguire.

Maguire seems to have given up on Pagoclone:

A few years back Maguire and his team tested a drug that showed great promise: Pagoclone, the only drug ever designed specifically to help stuttering [ERROR OF AUTHOR], eased anxiety among subjects and helped them speak more fluently, without any major side effects. But it hasn't been approved by the Food and Drug Administration, and it won't be any time soon, Maguire said.

And now he seems to believe in Asenapine:

... and he may have finally found the solution: a drug that's going through a trial at UC Irvine

Science must not care about its impact

Dave sent me a link to an article by Goldrake who is an interesting guy highlighting the same type of bad science. Check out his website.

However his article is on how a genetic origin adds more stigma to those with such a disorder.

And lastly, more compelling than any individual study, a review of the literature to date in 2006 found that overall, biogenetic causal theories, and labelling something as an “illness”, are both positively related to perceptions of dangerousness and unpredictability, and to fear and desire for social distance. They identified 19 studies addressing the question. 18 found that belief in a genetic or biological cause was associated with more negative attitudes to people with mental health problems. Just one found the opposite, that belief in a genetic or biological cause was associated with more positive attitudes.

I say very clearly that science should and must not care about how their findings impact on society and individuals with a biogenetic disorder. Science is about describing aspects of reality, and this cannot change depending on whether its impact is good or not.

However, no disorder ever is purely biogenetic. Humans are biopsychosocial beings with biological, psychological, and social processes being intricately linked. Whatever the origin of a disorder, be it biological (like a disease or gene), psychological (like traumatic stress), or social (like bullying), the impact is always felt on all three systems. For me, stuttering definitely starts and stays a biogenetic disorder, but its impact change psychological and social processes as well which in turn add to the disorder.

SIGN THE PETITION

Please please please please please sign the petition against an Indian movie that ridicules stuttering.

Go here for the on-line petition of the Indian Stuttering Association.

And please spread the link all over the stuttering sphere!

Are stutterers the new untouchables?

India is infamous for its caste system, with the untouchables at the bottom of the social rank. As the caste system softens up, the attitude towards people with handicap doesn't. Check out this latest Indian movie that makes fun of people who stutter. I invite you all to contact the movie makers and condemn the movie. That also concerns stuttering associations worldwide. But I already expect the National Stuttering Association to cowardly hide behind the "We only comment on national matters" as they did with my request for support when I had to deal with Luxembourg ignorance.

Thanks goes to Eric for making me aware of:

Being from Sri Lanka, I was keeping an eye on an Indian PWS group's yahoo group mailing list. I just got info about a bollywood film that mocks PWS.

Here's the message. I don't know if you have to have the yahoo group membership to view it. I'll post the entire message at the end.

Here is the link to an online petition.

Could you mension this on your blog, or increase public awareness in some other way?

On causality, correlation, experience, and interpretation of experience

Peter's comment is a good example of fuzzy thinking on causality, correlation, experience, and interpretation of experience, and a way of thinking that I often find with many but not all clinicians.

"David Seidler says that his stuttering was triggered by their moving to the US from Britain! Oh god. I hope he doesn't repeat that line too often. If you know him, tell him that millions moved to the US and did not start stuttering."

MANY PWS have stated that their stuttering was triggered by a stressful event. This should not be a point of debate, it's common knowledge. There is a difference between "triggered" and "caused". Why do you take issue with this?

Here is the resolution:

1) Yes, "many pws have stated that their stuttering was triggered by a stressful event", but they are deluded.

a. humans tend to reduce events into a single event. Look at 9/11, there is no single event at time T, but a series of events on the time scale of minutes, days, weeks, and years, on the spatial scale of

The King's speech movie

The movie The King's Speech (and here) will be the media event on stuttering for at least a decade. So please stuttering associations prepare a media strategy! It is the first main stream big screen movie that exclusively and explicitly focuses on stuttering. Stuttering is not just a symbol of nervousness, hesitancy, or fun, but the movie portrays a real person who stutters with all his issues, challenges and triumphs. No doubt, reality was sightly less dramatic. But I hear of realistic portrayals, i.e. no cures but improvement in speech and in psychosocial adaptation. This movie will do much to change the common people's perceptions. Colin Firth plays the king: the stuttering or stammering George VI or the stutter/stammer of George VI. (This strange sentence  gets a better google rating! ;-) We all know him as Bridget Jones' fall back guy and as Mr Darcy.

Unfortunately, I have also changed my view on the Queen Mother. I always looked at her biblical age with awe and inspiration. But may be she should have died at a reasonable age...

It turns out that David Seidler [the script writer] also had a stuttering problem as a child and drew inspiration from the king's struggle. Early in his career he wanted to write a screenplay about it. He dutifully asked the Queen Mother for permission. She agreed but told him "not in my lifetime". Little did he know she would live to be 101 and he would have to wait another 30 years.

I also watched a press conference where David Seidler says that his stuttering was triggered by their moving to the US from Britain! Oh god. I hope he doesn't repeat that line too often. If you know him, tell him that millions moved to the US and did not start stuttering. And millions started stuttering without moving to the US!

I challenge Rosalee Shenker to a public debate at the Oxford Dysfluency Conference on the efficacy of the Lidcombe treatment

I take up Rosalee Shenker's offer and challenge her to a public debate at the Oxford Dysfluency Conference this coming summer on the efficacy of the Lidcombe treatment .... As she said: "I will not be able to use this forum for ongoing discussion of this issue. Perhaps we can continue to ‘talk’ in another venue." Specifically, I challenge her statement Direct treatment for preschool age children has been shown to be effective in eliminating stuttering.
We need more and better one-to-one debates rather than self-glorifying and rarely challenged monologues by boring key note speakers or experts. And many clinicians need to be challenged on the pseudo-science they are engaging in. They might be nice people, dedicated and competent clinicians, and self-less fighters for people who stutter, but scientific truth doesn't care at all and results from rigorous debates without a social and PC filter, an active knowledge of statistics and fallacies, and an acknowledgement of one's own limitations.

A cheap alternative to Speech Easy

Check out this website. The author is proposing to build cheap alternatives to Speech Easy and other providers. Needless to say that the commercial alternatives are 1000s of dollars more expensive than the real material costs. I talked to him, and he wants to remain anonymous, and he wants people who stutter, and he is one but mild as far as I can detect, to have a cheap alternative and "destroy" the grip Speech Easy has. But I am sceptical he pulls it off. But it's up to him to disprove me.

A new documentary on stuttering

Check out the documentary by Joke Nyssen: here.

My name is Joke Nyssen. In April I completed my first feature documentary. STAMMERS tells the story of Jef, an 18-year old with autism spectrum disorder, who struggles with severe stammering. Together with his parents Jef made several unsuccessful attempts to overcome his speech problems. Now, years later, he decided to fight his stammering for the very last time. He is getting help from Gert Reunes, a therapist who specializes in stuttering and who struggled with his own words for over thirty years. Together they are working to improve Jef's fluency. And now that Jef feels there is hope again, he might be able to improve in other areas of his life as well.... STAMMERS has become a film about learning to speak again, excelling oneself and the great difficulties in the will to change.

We would like this film to reach as many people as possible. Therefore it would be a great opportunity for us if you could put the link to our trailer and our contact info on your blog and/or Facebook page. If you like it of course! You can watch the trailer here. (I couldn't embed the trailer...)

Link to Facebook page: http://www.facebook.com/pages/Stotters/116619985020709?ref=ts

Contact info: sophimages@skynet.be

More genes found.

I have reported that Drayna has found more genes, so here is the paper. Again, his team knows about this for at least a year I would guess. Can please any of my agents send me the full article? ,-)

[Autosomal recessive means that the disorder only occurs when both copies of the gene are mutated. A crash course on genetics from a non-geneticist: every gene has two copies (alleles): one from your mother and one from your real father (which might be different to your father, statistics claims more than 5%). If both copies are mutated (changed), which typically means the protein that the mutation is coded for is not functionally relevant for the body, the disorder breaks out. For some disorders, even if only one is mutated, the disorder breaks out and one talks about autosomal dominant.]

Hum Genet. 2010 Oct;128(4):461-3. Epub 2010 Aug 13.

Identification of an autosomal recessive stuttering locus on chromosome 3q13.2-3q13.33.

Raza MH, Riazuddin S, Drayna D.

National Institute on Deafness and Other Communication Disorders, National Institutes of Health, Bethesda, MD, USA.

Abstract

Stuttering is a common speech disorder with substantial genetic contributions. To better understand the genetic factors involved in stuttering, we performed a genome-wide linkage study in a newly-ascertained consanguineous stuttering family from Pakistan. A linkage scan in this family using parametric linkage analysis revealed significant linkage only on chromosome 3q13.2-3q13.33, with a maximum two-point LOD score of 4.23 under an autosomal recessive model of inheritance.

Effective in eliminating stuttering??

Here is my exchange with Rosalee Shenker on her statement about efficacy in early childhood intervention.

Your statement "Direct treatment for preschool age children has been shown to be effective in eliminating stuttering." is highly misleading. First of all, you don't mention the natural recovery rate. So a clinician can NEVER know whether they have been effective or whether it naturally happened. Second, you don't give the evidence. The not-independent long-term study shows relapse. AND no-one ever mentioned that many children could NOT be contacted any more. Third, stuttering has a neurobiological basis some of which is genetic. NO behavioural treatment will ever change the genes and at best re-shape behaviour to better deal with a neurobiological deficit. But that's hardly an elimination.

Rosalee's reply:

Hi Tom. Thanks for your feedback. Although the natural recovery rate can be as high as 80% in the general population, the paper presented to this conference shows the results of a group of

Questions on Lidcombe / early child intervention

A reader left some challenging questions for me:

1) What choice do we have today. What choice do parents of children who stutter have today in the year 2010? Parents can't wait.

Parents feel that they have to do something now, but this is a fallacy a priori. Often, the best reaction in an emergency is to stay calm and don't do anything for at least 10 seconds!

My recommendation

1) go for a check-up to eliminate other language, hearing, and speech issues.

2) wait a few months as most will recover, unless stuttering is too severe and the child suffers visibly.

3) choose an experienced therapist that you like and let her/him do whatever they do.

4) pray best case scenario, natural recovery, and expect worst case scenario by focusing on improving psychosocial adaptation to a life-time stuttering brain.

2) No treatment or Lidcombe treatment?

Lidcombe treatment a few months after onset as I can only see upside potential. Those who would

The pseudo-evidence of Shenker

I am sick of Rosalee Shenker's claims of Lidcombe wonders. She might be a nice person and a dedicated clinician, but she is a wannabe researcher with fuzzy thinking.

If you check the website of her Montreal centre, you will read

For example, the Lidcombe Programme for Early Intervention in Stuttering has been credited with eliminating the progression of stuttering in preschool aged children within a mean 11 clinical hours, with fluency being maintained for periods up to 4 years.

 and further

Studies have shown that stuttering can be maintained at near zero following treatment.

These statements are misleading. If she were not a pseudo-researcher with fuzzy thinking, I would even accuse her of deliberately lying to parents of children who stutter.

Check my post on the follow-up study of Lidcombe: here and here. Even this flawed study shows the relapse. In which dream world do they live?

Again, Lidcombe might at best modulate stuttering and psychosocial adaptation to stuttering, but not more. But other treatments might well do the same.

Good news for brain imaging research.

Sou-Eun Chang has won a grant to study the neurobiological correlates of childhood stuttering with respect to the different sexes. Congratulations! She did most of her PhD imaging work and her post-doc under Christy Ludlow at NIH, and is now an assistant professor at Michigan State University. I met her at NIH together with Christy Ludlow for lunch. They have done important research on children and stuttering: see here.
I am not sure she will have the same support at Michigan State than at NIH. NIH is really a science factory with state-of-the-art equipment, and crucially technological/scientific expertise. It's much easier to work in such an environment as you are basically forced to do good science. Being on your own gives you more freedom, and more freedom to make mistakes.

Addition by Soo-Eun: "This grant is an "R01" grant that is supported for 5 years (this is to be a longitudinal study to track brain development differences). The total amount funded is $1.8 million. The info you have there covers only the first year of the grant, which will be paid out of a slightly different funding mechanism (American Reinvestment and Recovery Act) but nevertheless still through NIDCD."

Awarded grant: Sexual dimorphism of neural development underlying childhood stuttering

Chang, Soo-Eun, Assistant Professor, schang7@msu.edu; Web site

• Department: Communicative Sciences and Disorders
• Title: Sexual dimorphism of neural development underlying childhood stuttering
• Funding Agency: National Institute on Deafness and other Communication
  

Dr. Patricia Zebrowski is a brain

I just listened to StutterTalk talking to Dr. Patricia Zebrowski. I am impressed by her lucid and intelligent insights into stuttering treatment. It is such a pleasure to listen to a clinician who is not fuzzy in thinking, and actually gets to the core of issues. They talked about common factors in adult stuttering treatment. She also proposes running a trial to look at the impact of therapists while keeping the technique constant. But here she is stretching her expertise and intuition area. Such a design is just not feasible in real life.

In the same pod cast, Peter takes on the Catholics: many kids at his old school told him that they accept stuttering as God given. In Luxembourg, we are also Catholics, kind of. More by name than by substance. But I can assure him that we do not blame stuttering on God. Of course, in a sense stuttering is imposed on us by nature. We are born or developed into a person who stutters.

Genetics, developmental, and environmental

Judy's ISAD13 also has a forum called "Ask the prof", and I was part of that once. But I was not asked again... ;-) She might have thought that I was a professional or others complained that I was not a professional. So now the level is higher again. I am just not good enough to give vague fuzzy feel-goody answers. No-one has answered genetics questions yet. I guess Dennis Drayna didn't have the time yet. So let me answer one of them here.

In about 50% cases of PDS, genetic connection is found. Is it true? For the rest, is it safe to assume that their stammering is the outcome of environmental factors (early negative speech experiences and learned response to that)? Thanks in advance!

This is a common misconception, even among most SLTs. If 50% is genetic, then the rest is non-genetic. Most geneticists call non-genetic environmental, but this is highly misleading for the non-expert mind. A better wording is to talk about developmental factors and socio-environmental factors. Developmental is mainly the process by which the fertilized egg is developing to an adult human being. The key phase is up to age 5. Developmental issues can arise due to allergy, malnutrition, random incidents like hitting your head, and illnesses like virus infections. In the strict sense they are of course environmentally driven, but it's more about a healthy environment needed by the body to build itself. What most people mean by environment is the social environment of the child. So it's wrong to say that 50% is due to social environment. This number is very likely low, maybe 10-20%. And 30%-40% is due to developmental issues.

That is often what the blank slaters (i.e. we are born equal) think. X (intelligence, personality, stuttering) might be 50% genetic, but we are so eager to point out that 50% is environmental, i.e. societal. But of course, they got it completely wrong. Most of the environment consists of neurobiological development. So the society, e.g. parents, schools, and social interactions, is at best 10%-20% in many cases.

ISAD13 conference

Judy Kuster has opened the ISAD13 conference. It's a great structure for debate, and everyone can ask questions. It's also interesting for historians to explore how the web experience felt like ten years ago! ;-) But I am all for low-tech. Never break a working system. The unfortunate thing about the conference is the mixed quality of the content and the writers. Some are very good. Others are just bad. And I am not talking about the lay people who stutter. I find their contribution useful and interesting. They are focusing on their experience (mostly that is), and discuss ways to promote stuttering and help people who stutter. The offenders are the clinicians turned researchers. Instead of focusing on their clinical experience, they go off into grandiose research projects. And absolute disaster really. Fuzzy thinking. Confident statements. Committing every possible fallacy.

And what also drives me insane are the "I really enjoyed reading your paper." phrases of the students and others who post questions or comments. I absolutely despise their deference and glorification of authority. And you can literally feel that their intellectual thinking is lethally infected with the social filter, political correctness, and I-need-to-say-something-supportive virus. And where do they get that from? From their teachers. They too are confusing a therapy setting with an intellectual debate. Cut out the bullshit, and get to the point! And no respect for authority! Use your own thinking! Focus on the arguments and not the person!