Monday, January 31, 2011

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:

Thursday, January 27, 2011

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.

Tuesday, January 25, 2011

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.

Friday, January 21, 2011

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.

Thursday, January 20, 2011

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.

Sunday, January 16, 2011

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?

Monday, January 10, 2011

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.

Sunday, January 09, 2011

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?

Thursday, January 06, 2011

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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Wednesday, January 05, 2011

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!

Sunday, January 02, 2011

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.

Saturday, January 01, 2011

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!