Psychotherapies

On Wednesday, Thursday, and Friday, Gilles and myself have reviewed and discussed psychotherapy for our upcoming book The Meme in Psychology. It was a mind-opening experience (a form of psychotherapy I guess :-) in the sense that I was able to see the wide range of psychotherapy approaches, and I am now able to see what has been done to me in the various stuttering therapy!

Clearly, psychotherapy is in a state of chaos, conceptual fuzziness and deprivation of a unifying framework (which we will of course provide in our book! ;-). Every psychotherapy seems to have created its own universe, seeing disorders through their lenses and treating accordingly. However, I have to revise my view that they kind of do the same thing. In fact, every psychotherapy is acting on a different dynamic of our complexity for change. Have you heard of the elephant and the blind people? Everyone describing the elephant in a completely different way: long tube, big trunk, bushy snake, massive surface. Each psychotherapy makes the elephant move in a different way: show him a mouse, shout a command, make a loud noise, pull his tail, and so on. I would also argue that not all psychotherapy are useful for all disorders.

And here comes the biggest danger. I grant psychoanalysis that some psychological issues are due to deferred childhood trauma and associated unconscious influences. However, the big question is to decide which one is. Of course, you can take all disordered behaviours and experiences and construct a theory based on some childhood and unconscious influences. However, that does not mean that it is the right causal theory! And that also explains the wild and idiotic psychoanalytic interpretation of stuttering being some kind of repressed needs and so on. Some guy gets paid to explain everything psychoanalytically. Having said this, if as a person who stutter, you sit done and do psycho-analysis, I am sure you will develop as a person and you will understand yourself better. And you might be able to better cope with stuttering. The same is true for behavioural therapy which assumes that normal learning processes led to disordered behaviour or experiences. For example, the brain has learned to fear spiders, and so we need to use the same processes to unlearn the fear. A not-very-bright and badly-informed person can come up with the theory that stuttering is all learned, which is clearly not the fact. However, this does not mean that some secondary stuttering is not receptive to behavioural techniques. In fact desensitization, unlearning secondary symptoms, and more do work for a committed hard-working patient.

And here is the critical issue. There is a big big big difference between the theory underlying a psychotherapy and the associated treatment techniques. As I said several times before, a technique might help but the theory used might be wrong or incomplete. So I would say that all psychotherapies can help for some people in some situations, and even if it is just for personal development. Of course, some will help more and more on the speech fluency side because they are closer to the causes of stuttering. However, don't talk to me about them giving a good theory of why people stutter in the first place. They don't. The practioners mostly create a theory based on their approach's focus on humans.

Winning poem

Here is the winner of the poem contest with a very intellectual twist:

Tiger, Tiger, so good with a putter
is it true you used to stutter

And the second winner is:

Stutter with love!
Pause comfortably!
then Move on with elan!

Disco Fever

Here is my performance at the District Toastmaster Conference. That's for the European title. The conference was held at a posh hotel just off the infamous Reeperbahn red-light district in Hamburg.


And here is the division contest, the level below, speech where I won.

Back from Hamburg

I am back from Hamburg from the District Conference of Toastmasters held in a chic hotel just off the most notorious streets in Europe, the Davidstrasse, the Herbertstrasse, and Reeperbahn. I did not make it into the Top 3, but my speech went well. Speaking in front of 200 people, it was a good feeling. I was not scared at all; I am starting to suspect some pathology on my part! Exhibitionism? Narcissism? Mania? Actually I enjoyed my speech and had the audience with lots of laughter. The ending was a bit messed up, as my second last line got such a response that the contest chair thought my speech was finished and came up to the podium! So my last line was a bit of a anti-climax. Many including myself had me in the Top3. Everyone agreed that two speeches were a bit better: one had the best content, and the other was perfect in delivery. I was just behind. But, I guess the ending issue got me... The judges are a bit picky on technicalities. In any case, it was an excellent experience to make it to the final stage and compete for the European Speaker. I was not far away and definitely I now know that I can speak and capture an audience of 200 people. There are video recordings. So I might post them, and face the verdict.

Vote for your favourite poem!

What is your favourite poem? Vote here ----->

An eager thought left unspoken
Of a blank mind waiting for it to be spoken.

Dreaded light vowels
following the letter l
straight into the wall.

Stutter with love!
Pause comfortably!
then Move on with elan!

we listen, think, pause and stutter
we all have voices that matter

Winner Winner, Chicken Dinner
Winner Winner, I st st st stammer

Tiger, Tiger, so good with a putter
is it true you used to stutter

Wit masquerades as a fool,
After he opens his mouth.

Poem Contest

Give me your 2-liner poem about stuttering. Surely, yours cannot be worse than mine:

 An eager thought left unspoken
Of a blank mind waiting for it to be spoken.

Low birth weight doubles to triples the risk of stuttering!!

Per Alm and myself had some brain storming on this ground breaking large scale epidemiological article shedding important information on the underlying causes of stuttering:

Matern Child Health J. 2009 Nov 10.
Birth Weight and Health and Developmental Outcomes in US Children, 1997-2005.

Boulet SL, Schieve LA, Boyle CA.

National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 1600 Clifton Road, MS-D02, Atlanta, GA, 30333, USA, sboulet@cdc.gov.

The primary goal of this study was to assess the association between the full birth weight distribution and prevalence of specific developmental disabilities and related measures of health and special education services utilization in US children. Using data from the 1997-2005 National Health Interview Survey (NHIS) Sample Child Core, we identified 87,578 children 3-17 years of age with parent-reported information on birth weight. We estimated the prevalences of DDs (attention-deficit/hyperactivity disorder [ADHD], autism, cerebral palsy, hearing impairment, learning disability without mental retardation, mental retardation, seizures, stuttering/stammering, and other developmental delay) and several indicators of health services utilization within a range of birth weight categories. We calculated odds ratios adjusted for demographic factors (AOR). We observed trends of decreasing disability/indicator prevalence with increasing birth weight up to a plateau. Although associations were strongest for very low birth weight, children with "normal" birth weights of 2,500-2,999 g were more likely than those with birth weights of 3,500-3,999 g to have mental retardation (AOR 1.9 [95% CI: 1.4-2.6]), cerebral palsy (AOR 2.4 [95% CI: 1.5-3.8]), learning disability without mental retardation (AOR 1.2 [95% CI: 1.1-1.4]), ADHD (AOR 1.2 [95% CI: 1.1-1.3]), and other developmental delay (AOR 1.3 [95% CI: 1.1-1.5]) and to receive special education services (AOR 1.3 [95% CI: 1.2-1.5]). While much research has focused on the health and developmental outcomes of low and very low birth weight children, these findings suggest that additional study of a continuous range of birth weights may be warranted.

Here are the conclusions of our debate. The statistical power of the study is very high due to the 88'000 children, and clearly correlates stuttering to birth weight. There is now clear empirical evidence that children in the lowest ranges of birth weight are twice to three times more likely to develop stuttering as compared to their normal-weight counterparts. Low birth weight is related to premature birth but also to various pregnancy problems. There can be a gene effect, but often it is environmental. (We are not completely sure about this split). It indicates abnormal neurobiological development of the brain and the body. Per will contact the authors to ask for a correlation matrix between the disorders, i.e. do some disorders occur at the same time. Per has written an article on a possible ADHD and stuttering connection. And Jelena Tadic has also talked about stuttering co-occuring with other disorders. The large study should more or less settle this open issue. Which disorders coincide with stuttering above random coincidence?

To summarize, low birth weight doubles to triples the risk of developing stuttering and confirms the suspicious that "stuttering" can start at the very least in these cases (but very likely in nearly all cases) years before the actual onset of overt stuttering!

Constructive meeting

Here is an update of my "battle" for people who stutter in Luxembourg. On Wednesday, I met up with the director of the special school dedicated to speech and language impairments, and one of his senior therapists, a special school teacher with a PhD in psychology. We had a constructive discussion after clarification of a few issues like the bad article, no clarification to the article, and more. We talked about causes and treatment of stuttering. To my "horror" and surprise, they are doing Lidcombe with the kids in Luxembourg. It seems to be everywhere nowadays. ;-) Then they asked me about my opinion, and I said that I have no idea whether it will help or not. Like any therapy, it could well modulate the severity if done well by therapist and by parents, and well received by the child. But there is no evidence that it will get rid of stuttering completely or does a better job than other treatments. They asked me what I would recommend, and I said that I do not know and that there is no clear evidence, but that I would do the therapy with the best therapist. I also said that we now know that intervention at the very least does not harm kids. We also talked about the causes of stuttering and whether structural changes are a consequence or the effect of stuttering. We discussed a few measures to improve treatment offers in Luxembourg: updating information leaflets, workshop on early intervention treatments, and organising day workshop for kids (and parents) who stutter.

So in general, a very constructive meeting. Of course, as always, you should watch the actions and not the words. And in a few months will see whether there are some positive changes.

Words and gesture processed in same brain region.

Words and gestures are processed in the same brain region suggesting an evolutionary link between interpretation of body movements developing into understanding spoken language.

Your ability to make sense of Groucho's words and Harpo's pantomimes in an old Marx Brothers movie takes place in the same regions of your brain, says new research funded by the National Institute on Deafness and Other Communication Disorders (NIDCD), one of the National Institutes of Health.

I won the Division Contest

I f*******g won the Toastmasters Division Contest!!!! I had a good day, and the audience laughed at all the jokes which was a bit shocking. My body language was very good. Take note: if your speech is not that stable, at least you need to have good body control and content! ;-) So all those disco nights and Karate katas had some use!

The Division Contest is organized twice a year and was the humorous speech contest. It chooses the best speaker of all Toastmaster clubs in France, Belgium, and Luxembourg. There were eight competitors, the first two from each Area Contest. And each area has between 3 and 6 clubs, I believe, which each organize a club contest. In two weeks time, I will compete in Hamburg in the District Contest against 9 other division winners for the best speaker of continental Europe (18 countries with 152 active clubs). Wish me fluency! ;-)

Succeeding despite

You can succeed despite. A quick 3-minute guide!

Fluke or side effect?

A reader sent me his report on taking Pagoclone and Zyprexa, and discusses his experiences. We need to be aware of and discuss the potential downside of active substances.

I am a 34 year old PWS that started stuttering at the age of 12.  Go figure..  I was on the phase 2 Pagaclone trial a few years back and never gained any noticeable improvement with my speech.   I tried Zyprexa Zydis about 8 months ago.  I started at a daily 5 mg dose and after 2 week started to feel tired and withdrawn.  My fluency and blocking is worse when I am tired and that is what I felt like all day.  My doctor increased my daily dose to 7.5 mg and then eventually to 10 mg.  I felt even more withdrawn and even lethargic.  I noticed that my left eye lid started to involuntary tremor.  This never happened before.  I eventually stopped taking Zyprexa Zydis after 4 months.  I felt a boost of energy and my fluency was much better.  My eye tremor did not go away though.  It's actually worse now then when I was on Zyprexa.  It is not always visible but I can feel it and it is extremely annoying.  It tends to get worse under stress and expands to my other eye at times.  I am currently seeing a neurologist for my options.  I just wanted to let any PWS interested in trying Zyprexa know.  This does not necessarily mean that it will happen to you.  Just stating the facts.

What is going on here? There are two possible explanations. First, the tremor could be the result of taking Zyprexa, maybe a rare side effect. Or, second, he would have developed the eye tremor irrespectively of having taken Zyprexa. Maybe the tremor started due to another reasons: stress related? neurological issues? I thought about this, and it is impossible to give a definite statement, but only a statistical one.

There is a correlation between Zyprexa and eye tremors: Z related to ET. Everytime you have a correlation, there are four possible causes of this correlation: (A&B random, A causes B, B causes A, C causes A&B)

1) Z related to ET randomly. So by chance both happened around the same time. To confirm this random fluke, one needs to look at 100s of people and ask: Do the Zyprexa subjects have more eye tremors or not? If not, it is a random correlation.

2) Z causes ET. The compound Z causes ET presumably by modulating or modifying the neurology. This can be confirmed in random control trials if the Zyprexa group has eye tremors more often.

3) ET causes Z. I suspect that the eye tremor cannot cause the patient to take Zyprexa!! Rejected.

4) X causes ET and Z. A mysterious unknown force causes the patient to take Zyprexa AND have eye tremors. Here is a wild theory. The patient experiences the placebo effect while on Zyprexa and that also causes eye tremor in some. I am pretty sure that is not the case, but just to illustrate my point. Rejected.

So if you have eye tremor and assuming it is a proven side effect (which I do not think it is), do you know for sure it is due to Zyprexa? NO! It might STILL be a random fluke, a coincidence, or you are part of those who have this type of side effect. The only way to know with some certainty is to stop taking Zyprexa and see what is happening.

The world is complicated, isn't it? :-)

The faces of stuttering

Stuttering occurs in all countries, even in Mauritius! (Thanks to Jim Caroopen for the picture.)

Your own truth might be wrong

I often hear people telling me that they stutter because X or Y. If I do not agree, they reply: How do you dare! How can you know myself better than I know myself. I know my own truth. It is a logical fallacy. It is clear that I cannot deny someone's experiences as a person who stutter: how he felt, what people told him, when he stutters more or less, and so on. And, I will never be able to completely understand them all. However, an interpretation of these experiences weaved into a theory on why they stutter is a completely different story. They glue the pieces of experiences together, but so can anyone else and they might come up with a different interpretation. We humans are easily fooled. A smile can stick as a pleasant experience in one's mind as a sign of sympathy from the stranger, but your friend's interpretation is that of a smile of embarrassment that you are stuttering.

It is very important to separate experience from interpretation of experience. You are the owner of your experiences, but not of the interpretation of your experiences for you could be wrong.

Sudden stuttering.

I get a lot of emails, and every person is different. Here is one such email. What would you suggest to him?

Hi Tom,

I don’t know if you have time for this. But I just feel like writing. You are the first person I have been in contact with for my stuttering problem. I would really like to share my experience since this is my biggest problem recently.

I have never stuttered. I am European and I have been in USA for a year now. I never remember stuttering before. I didn’t even know what stuttering was.

In high school I do remember some situations for a couple of weeks or a month that I couldn’t say FOUR. “Number 4” in my own language begins with “K”. Although it bothered me for a while. It wasn’t a problem to be concerned about and I always had my ups and downs on some other words.

What happened was that I might go through years or more than 6 months without stuttering. Than I would stutter for a while and then it would stop again.

So I never considered stuttering as a problem. I just thought that it happened whenever I wasn’t in a good mood.

In general I wouldn’t consider my self a stutterer. Or maybe 5%. But here is where the problems began. I came here in USA and of course my native language is not English.

I didn’t have trouble for a while and I never thought I would up until my English got better. I mean when it got fluent. And a lot of Americans are surprised by my accent. I barely have an accent. A few people can notice it.

But for the past 6 months I have gone through the most difficult period of my life. I stutter really badly. And it wasn’t up until recently that I have started to make a research about it. I am not a stutterer at all comparing to what I have seen on YouTube. I might stutter 4 or 5 words a day. (I know its nothing). But still those moments kill me personally. And its such a bad feeling. Or some words that I know that I will stutter and always trying to avoid them.

Since you are more experienced I just bought (right now) 5-htp 100 mg pills. Do you think that might help? I don’t have time to go trough therapy and all that. The other thing that I know is that the therapist won’t consider me a stutterer at all.

Because I don’t stutter when I talk about stuttering. Or we might talk to each other for hours and I won’t stutter at all. My stutter is really rare. But I do have some bad days.

The worst situation is. I love Caramel Mocha. Once I went to starbucks and I stuttered when I said it. Now I cant order it anymore. I always stutter at K. (K- aramel) When a friend asks me while waiting on the line “what are you getting?” I just say it normally. But when I get in front of the counter. I cant say it and I order something else.

Should I take these pills? What dose do you recommend?

New results from Lu et al.

Yet again we have new brain imaging work from China. More news as soon as I have read the article.

Exp Neurol. 2009 Oct 28.

The Neural Substrates for Atypical Planning and Execution of Word Production in Stuttering.

Lu C, Chen C, Ning N, Ding G, Guo T, Peng D, Yang Y, Li K, Lin C.

State Key Laboratory of Cognitive Neuroscience and Learning, Beijing Normal University, Beijing 100875, China.

Using an fMRI-based classification approach and the structural equation modeling (SEM) method, this study examined the neural bases of atypical planning and execution processes involved in stuttering. 12 stuttering speakers and 12 controls were asked to name pictures under different conditions (single-syllable, multi-syllable, or repeated-syllable) in the scanner. The contrasts between conditions provided information about planning and execution processes. The classification analysis showed that, as compared to non-stuttering controls, stuttering speakers' atypical planning of speech was evident in their neural activities in the bilateral inferior frontal gyrus (IFG) and right putamen and their atypical execution of speech was evident in their activations in the right cerebellum and insula, left premotor area (PMA) and angular gyrus (AG). SEM results further revealed two parallel neural circuits-the basal ganglia-IFG/PMA circuit and the cerebellum-PMA circuit-that were involved in atypical planning and execution processes of stuttering, respectively. The AG appeared to be involved in the interface of atypical planning and execution in stuttering. These results are discussed in terms of their implications to the theories about stuttering and to clinical applications.

PMID: 19879262

Question parlamentaire

Here is Claude Meisch's parliamentary question: (in French, we are a strange country switching between Luxembourgish, German and French, and sometimes English!)

Monsieur le Président,

J’ai l’honneur de vous informer que, conformément à l’article 80 de notre Règlement interne, je souhaite poser la question parlementaire suivante à Madame la Ministre de l’Education nationale et de la Formation professionnelle ainsi qu’à Monsieur le Ministre de la Santé et de la Sécurité sociale:

« 1% de la population mondiale bégaierait, selon les estimations, soit environ 60 millions de personnes, dont environ 5.000 au Luxembourg en plus, 5% des jeunes enfants, quelque 300 enfants par an, traversent une période de bégaiement. La journée mondiale du bégaiement (22 octobre) est l'occasion d'une prise de conscience par les non bégayants des difficultés qu'entraine cette infirmité.

Même si les spécialistes n'ont pas encore déterminé, de façon certaine, les causes de ce trouble du langage, il est possible de le contrôler ou de le guérir par des traitements orthophoniques et psychologiques.

Partant, je souhaiterais poser les questions suivantes à Madame la Ministre de l’Education nationale et de la Formation professionnelle ainsi qu’à Monsieur le Ministre de la Santé et de la Sécurité sociale:

Combien d’enfants et d’adultes sont connus être concernés par cette infirmité au Luxembourg?

A qui incombe la responsabilité pour leur traitement (enfants et adultes)? Quelle est la formation des responsables pour leur traitement

Combien d’adultes suivent un traitement à l’étranger? Ce traitement est-il remboursé par la Caisse Nationale de Santé?

Selon mes informations, la nomenclature permettrait uniquement aux logopèdes de traiter les adultes atteints de l’infirmité du bégaiement? Vu le nombre assez restreint de personnes concernées, une spécialisation des logopèdes devient quasiment impossible. Ne serait-il, dans le but d’un meilleur traitement du bégaiement, pas opportun de permettre une spécialisation aux logopèdes? »

Croyez, je vous prie, Monsieur le Président, à l’assurance de ma très haute considération.

Parliamentary Question on Stuttering

I managed to get Claude Meisch to ask a parliamentary question on the state and treatment of stuttering in Luxembourg. His request should carry considerable political weight, because he is not only a member of parliament, but also the Leader of the Opposition in Luxembourg at the youngish age of 38. For our US friends, he would be the Luxembourg version of John Boehmer/John McCain, pardon I mean Rush Limbaugh. For our English friends, David Cameron. Many thanks to him!

His question is addressed to the The Minister of Health and the Minister of Education, which typically reply in an official letter and in parliament, and at least should address some of the questions addressed in the parliamentary questions. The questions asked were rather polite, and do not touch the more sensitive issue on how it is possible that our national experts are quoted in an article making blatantly false statements on the causes of stuttering that the press release has neatly taken apart. Nevertheless expect both ministries to ask some rather existential questions internally: What is stuttering? Who is responsible? What do we actually do? Is this connected to the press release? Who is this Tom Weidig? Have you read his blog? How many are in treatment? How many have been in treatment? And so on. And the answer is that no-one has seriously thought about stuttering and I am not even sure they can dig out good long-term treatment data. I hope that they are coming up with some real answers or constructive proposals and not just some alibi answers.

The only thing I am not too excited about is that Claude Meisch choose to stick to the diplomatic "causes of stuttering are uncertain" and the brow-rising "can be controlled or cured with speech therapy and psychological intervention" lines. Too much room to wiggle out for our trauma-causes-stuttering and kids-imitate fetishists escaping the significant evidence for a neurobiological basis and for therapists to claim cures. In any case, it is progress.

Became second in Area Contest

I became second out of six club winners in the National Area Toastmasters contest in the category Humorous Speech, and so I am allowed to compete in the Division meeting Mid November with the winners from France, the Netherlands, and Belgium.

Here is my speech: (Please note that TUG stands for The Ugliest Girl in the Discotheque.)

The hunter hunts the prey
But sometimes the prey starts hunting the hunter!

Fellow Toastmasters, Welcomed Guests, That's exactly what happened to me!

I am stuttering and I was at an intensive three week stuttering therapy to work on my speech.
One night, we went to the local discotheque
We were dancing....
And my therapist comes over:
Tom Why don't you practise controlling your stuttering in a demanding speaking situation?
Try to chat up a few girls!
Look Tom, remember what you did in therapy.
It is all about hierarchies. Try the least demanding situation first.
Ok. Ok. Ok. But what is the least demanding speaking situation when chatting up girls.
And then I got it: TUG! I need to start with TUG.
I know I know you don't like this.
But consider my situation:
I could not possibly chat up the most beautiful girl in the discotheque.
Why? Because every single men stutters when talking to her: H---helllo. C--an I buy you a drink
Do you want me to keep on stuttering?
I need to do this for therapeutic reasons. I hate to do it, but I have to do it!
It's like in animal movies. You know at the end:
In the process of making this movie no animal has been harmed!
TUG doesn't know that she is TUG.
No! Only I know about it, and possibly all my friends. But that's it!
And FINALLY, she should be happy to talk me.
After all, I am NOT the ugliest guy in the discotheque!
I am tall, handsome, and charming...
First I am locating TUG.
MMm... mmmm.. mmm..
I cant do this. I do not want to offend someone.
Ok. You. I know you are a man... a very strong man.
But can you play TUG? OK. Thanks!
So I am scanning my environment! And then I found her.
TUG! It was her.
But how should I approach her?
Chat-up lines are extremely funny -- for men. Not for women.
I am just going to be natural.. Just be yourself Tom.
And I am the nicest guy in the discotheque!
Hi, I am Tom. How are you?
But how should approach her?
I am going to dance to her slowly
So I am dancing and getting closer.
So I move to her and say: Hi, I am Tom. How are you?
And she says: MISERABLE. NAFF OFF. And storms off!
--- walking back and down ----
Just imagine:
Not even... I repeat... Not even TUG wants to talk to me!!
A complete disaster, my friends were laughing.
So I was trying to hunt the weakest prey: TUG.
But at the end of the night. I was been hunted.
And I swear to god, I never tried to chat up any more girls!!!

Mauritius, Fluency Island

The Stuttering Brain is read world wide. I recently got an email from the Mauritius self-help group. They asked me to post a link to their magazine Fluency Island celebrating four years of self-help with lots of articles. Isn't it nice to know that where ever we travel we are at home sharing a similar experience in different cultures. Do you think she is a member of the self-help group? Or maybe she is a speech and language therapist? ;-)

Mastering stuttering should master their thinking first.

Let us run through the introduction of Mastering Stuttering to see where they go wrong.

How is it that you can speak fluently in some contexts and not speak fluently in other contexts? That most People Who Stutter (PWS) can speak fluently in certain contexts indicates that they have two primary speaking strategies that they have learned: 1) They can speak fluently which means they know how to talk. 2) Given the right circumstances, they also have a speaking strategy for blocking.
What determines whether or not the PWS speaks freely and fluently or whether they block? We believe that it is the meaning that the PWS gives to the context of where they are speaking. If the context is non-threatening to them, the strategy for speaking freely and fluently will be activated and they will speak fluently. On-the-other-hand, if the context is threatening to the person, then the blocking strategy will be activated and the person will start blocking.

Certainly these factors are influencing how we speak but they do not determine our stuttering behaviours.

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.

Cool graph

It is sooo true. If you have not enough information, the confusion is great. But if you have too much information, the confusion is as great. That's the challenge we face to communicate stuttering to everyone, but also to describe it to therapists. We cannot start talking about the details of genes or different fiber tracts within the brain.

Why supporting me?

It is important for us who stutter to have an independent voice in the debate on stuttering research, treatment, and politics. Someone who dares to speak out. And someone who knows what he talks about.

Here is what I do for us

• I am speaking out my mind or that of stutterers, scientists or therapists who do not dare to speak out for various reasons. I am often their voice.
• I am trying to change the nature of the debate. We need less obsession to a feel-good consensus but more

Why do kids starts stuttering?

Over the last days, I was faced with explaining how children start stuttering.

Here is what I would say. First, children start stuttering because the brain regions involved in speech are not working together well, which leads to delays in speech initiation, which is modulated by stress, neurotransmitter levels, general well-being and which may lead to learned secondary behaviours. There are two different reasons why these regions are not working well together: either because some or all of the regions or connections are developing abnormally slow (possibly due to genes or environmental factors unrelated to stuttering in adults) OR there are fundamental structural issues with one or more regions or connections between (due to genes or/and neurological damage due to environmental events like virus infections, head trauma, birth issues). Unfortunately, both causes lead to very similar dysfunctions, namely delays in speech initiation, and though it is currently not possible to distinguish between both and to predict which child will recover. Recovery is probably primarily due to an abnormally slow but eventual development

Radio interview and aftermath

A radio interview (here in Letzebuergesch after the news flash!) with me will appear on the morning news tomorrow on National radio with an audience of more than 150'000 people. I hope this interview will further raise awareness of stuttering, and dispel a few myths on stuttering. As explained here and here, a Tageblatt article based on interviews with our "national experts" accompanying my "non-expert" interview was catastrophically misinformed. Stuttering has its main cause in the psyche, stuttering can be imitated by kids, and so on. I had to react even though I avoid at all costs to be dragged into Luxembourg life and issues!! ;-) Unfortunately both key people were not man enough to ask for and make a clarification publicly. So I worked full-time for two days to get a press release by international experts and associations, and sent it to all press media and SLTs.

Myths, Beliefs and Straight Talk

Check out this great text on myths on stuttering compiled by Peter Reitzes and Greg Snyder. I hope they don't mind to see their work on my blog!

Myths, Beliefs and Straight Talk
I will outgrow my stuttering. Many teenagers and adults who stutter hope or believe that they will stop stuttering one day. Many deny that stuttering can be a problem or may even deny that their stuttering exists at all. Others may want stuttering to go away so much that they simply begin believing that it just might. For example, a 9th grade person who stutters was asked how he was going to manage his stuttering in college. The young man replied, “I won’t stutter in college.” This belief may be due to a couple of reasons, such as denial or hope.
Unfortunately, most people who recover from stuttering do so in early childhood. For example, most people start stuttering between 2-4 years of age, so if stuttering is going to go away by itself, it usually does so by 7 or 8 years of age. If you continue stuttering into your teenage years, you will most likely continue to stutter throughout adulthood. The good news is that there are many options and choices in managing stuttering productively. However, continuing to avoid dealing with stuttering due to denial or a hope or belief that it might simply “go away” tends to make our problems worse, not better.

IT skills of some SLTs and in self-help

Over the last hours, I am witnessing the extraordinary IT skills and understanding of some SLTs and some in self-help. I received an empty email with cc asr-speakeasy@... , and now I have tens of emails of SLTs asking to be removed from a mailing list that does not really exist except as the list of emails of someone.

The address is very likely an open relay, which means that it is a mailing list that is accessible to those who sent an email to the email address of the mailing list and this email is distributed to the members of the mailing list.

So someone by accident sent his or her mailing list as cc and now everyone replies and thereby sending it to everyone else. And everyone else thinking "I am on a mailing list" but they are not really.

My advise: IGNORE AND DO NOT REPLY.

I wonder how can they properly digest all the complicated statistics of outcome studies and scientific research if they do not even realize what is going on here?

And to all those who have received the email and did not reply. Congratulations! You have passed the test, and have potential!

[The email address has now been cancelled.]

Half a second to speech

A friend sent me this interesting article on speech:

The study found that it takes about half a second to transform something we think into something we say. And three very different kinds of processing needed for speech are all happening in a small part of the brain called Broca's area, which lies beneath the left temple.

I will talk about more this in future posts.

More gossip on Pagoclone trial

Here is more gossip on the Pagoclone trials: (Thanks to Holger.)

"I`m going in the open label phase in december, I also will keep you updated, but just to let you know, there are people that have gotten great results from what I was told. I have noticed zero for speech enhancement and side effects, there is a big chance I am on the placebo, I will know in december when they give me the real meds."

stutteringforum.com 21.10.2009

"Hi everybody, I have been involved in the clinical trail on Pacoclone for more that 6 months. Right now, I am on the last batch of the double-blinded phase. The first three batches of the pills which I took, had little or no effect on my speech. However, this last batch really have a positive effect on my speech. It seems like a miracle."

stutteringforum.com 21.10.2009

Press release published - Response by Jean-Marc Hild.

The press release has been published in the Luxembourg daily as a response to the factually incorrect statements on stuttering. That's very good news as this will set the record straight on the causes of stuttering and on treatment, and requires a clarification from Hermes and Hild.

I received a very constructive and genuine email from Jean-Marc Hild, Head of the Service Audiophonologique. He basically agreed with what I said in my interview and he also distanced himself from the article and the statements attributed to Georges Hermes on the causes of stuttering. He clearly said that he himself believes that stuttering has a physiological underlying cause. The press release has criticized the statement attributed to him that "using touching the knee or snip the fingers" should be part of the therapy. He explained that he feels treated unfairly because this statement has been taken out of context, as he explained and listed several treatment approaches to the journalist and only mentioned "using touching the knee or snip the fingers" as a useful tool (I do not share this view but it is debatable.) but not the essential part of the treatment which requires looking at the whole person.  The journalist only kept the knee and fingers. As you can imagine, he said that he learned the lesson of never giving a quick interview without checking the written article beforehand! His email and story sounds genuine. He also offered me to visit the institute, and said that he would be very interested in me collaborating with the institute to benefit from my expertise.

I have offered him to make his email public so that his side of the story can be heard.

PRESS RELEASE

This press release went out to all the Luxembourg media outlets, parent associations, and a few ministries to set the record straight on causes and treatment of stuttering after the misinformed interview of Hild and Hermes. It took me nearly two days to get everyone on board and to have a common press release text. Big thanks to Prof Ratner (for feedback and encouragement), the British Stammering Association (especially to Norbert Lieckfeldt for encouragement, the first draft and feedback), Prof Neuman, Prof Euler, the German Stuttering Association (Beate Schwittay), the Swedish Association (Anita Blom), and last but not least ELSA (Edwin Farr).

PRESS RELEASE (original version) October 22nd, 2009

Response by international stuttering associations and world-leading university professors to statements made on the causes and treatment of stuttering attributed to Georges Hermes, Director of the Centre de Logopédie, and Jean Marc Hild, the Head of the Service Audiophonologique in Luxembourg.

Today is International Stuttering Awareness Day. Like most communication disabilities, stuttering is generally not well understood by the general public, and there are many myths and prejudices. 
We are surprised to read, in the Luxembourg Tageblatt on October 21st, reports of the views of the Director of the Centre de Logopédie, Georges Hermes, and the Head of the Service Audiophonologique, Jean Marc Hild, on the causes of stuttering, and what treatments are available. We feel compelled to reply, because these views, if reported correctly, are rather eccentric, and at odds with research findings of the last decade and more.

Tageblatt interview in English

I am still amazed at the power of blogging. A reader, Ora, was willing to translate my interview into English:

Conversation with the researcher and “Stuttering Expert” Dr. Tom Weidig in the Context of World Stuttering Day

Fanta Instead of Cola and Emails Instead of Telephone
By Luc Laboulle
From Luxembourg Tageblatt – Wednesday, 21 October 2009.
(Translated by Ora McCreary)

The unbelievable state of knowledge on stuttering in my home country

Today my interview with the Tageblatt, the Luxembourg daily, got published. They kindly allowed me to link to the pdf file: Tom's Tageblatt interview (in German). What a wonderful opportunity to inform everyone about stuttering and share our experiences and dispel a few myths about stuttering. Or so I thought! :-( And then the newspaper had the glorious (but very understandable) idea to ask the "experts" at the National Center for Speech and Language Therapy, the Centre de Logopédie. And here are the results of their interview: Interview of Hild and Hermes. Here is an English translation.

I am not questioning their motivation and I am sure they want the best for the patients. However. According to Georges Hermes, Director (!) of the Center, on the causes of stuttering: (unless he has been misquoted) (translation from German)

The causes of stuttering are diverse but nearly always to be found in the psyche of the person who stutters.

There are three causes: Stuttering as an expression of traumatic experiences or negative experiences over a long period are the most common cause for stuttering.

The learned stuttering, where kids imitate stutterers and cannot get out of this cycle anymore.

Stuttering due to developmental issues of speech and language found mostly in children of kindergarten age.

I cannot believe that the director of the national center seems to have out-dated ideas on stuttering. Unless he was misquoted. Where is the scientific evidence? Even wikipedia knows better!

Here is what the US National Association writes:

Free audio book for stuttering kids!

Check out the free audio book of Stuttering Stan Takes a Stand. He is teased and bullied about his stuttering, Stanley the squirrel refuses to let on that his feelings are being hurt, until one day he learns an important lesson from a new friend.

In the name of us all, thanks a lot for the efforts you are in!!! Written by Artie Knapp. Illustrations by Barbara Leonard Gibson. Read by Alessandro Cima.

Just a little note: maybe this could have read by a stutterer, too! Alessandro is a bit too fluent for me. ;-)

Interview with Tageblatt

I had an interview with the Luxembourg daily Tageblatt on stuttering and my blogging activities. A Tageblatt journalist, who attended the same winter camp for teenagers 20 years (!) ago, contacted me, because he is reading my blog sporadically. He wants to do a story for the World Stuttering Day! Great. I had already two interviews in Luxembourg newspapers: one on science, and one on my book on venture capital funds. And a radio interview on stuttering. There is nothing really happening in stuttering in Luxembourg. We have a stuttering association, but it's defunct right now. And I do not really have the time and energy to resurrect it.

A bit of cultural education. The Luxembourg newspapers are mainly in German, but there are also French and Luxembourgish articles. Lately we also have pure French newspapers which are mostly for the French speaking commuters. It is a bit of mess, really. It often depends on the journalist's preference to a language as to which language is used. But radio and TV is mainly in Luxembourgish. Though there is an English Ara city radio and a Portuguese Radio Latina. What's interesting about Luxembourg is that we strictly speaking do not really have press freedom. The biggest newspaper Luxemburger Wort is owned by the Catholic Chuch, the Tageblatt by the Trade Union, the Journal by the Liberal Democrats! But unlike in the US, the newspapers in Luxembourg are relatively neutral in their reporting and ideological fights between them is infinitesimally smaller than compared to the US: see Fox News vs liberal media. Everyone, newspaper and parties, are more or less on the same line and only differ in nuances: it's called the Luxembourg consensus. I used to be a part-time science journalist for the Luxemburger Wort, and wrote a few articles on black holes and the laws of nature.

Won humorous speech club contest!

Yesterday evening, I won the humorous speech contest of my Toastmasters Club! Five of 40 members participated in the contest. The humorous speech contest is the most difficult one psychologically speaking, because what if nobody laughs! :-) You need to be a hardened speaker! On Saturday I will compete in the Luxembourg area contest against 5 other participants (two each from the three clubs). Toastmasters is really a great and safe place to practise public speaking. I can only recommend it to everyone! It's the second time I participated and the second time that I won. Last time I went until Paris.

Again, my success shows that fluent speech is just one part of communication. Public Speaking is more. It's about writing a good speech that flows well, body language, stage presence, vocal variety, engaging your audience, pausing, humour and meaning. Some cynics might say that I only win, because I stutter. They have pity. Sure, I probably get a few extra points for my courage, but I am immediately loosing them again because of dysfluent speech.

A common fallacy trap

Time and time again, I see the following fallacy. Someone comes up with a theory of stuttering that fits their experience, and then they automatically believe that their interpretation of facts or theory must be right. Of course, that is fallacious. Why? Because there might be alternative theories that also fits all facts. So which theories is the correct one?

Here is an example. My 95-year old great aunt keeps on telling me that someone stole something from her, and I ask why. She says: Well I had placed my money here and now it is not there anymore. Therefore someone must have stolen the money, and she claims it is her neighbour. Her theory is completely logical, consistent, and fits all the facts. Indeed maybe her neighbour sneaked in to steal, after all the money is not there anymore, he could have jumped over the fence, and he is over-friendly offering her help! Very suspicious. The trouble is of course that there is an alternative theory, namely that at her advanced age of 95 she just simply put the money somewhere else and forgot about it! I told her clearly that while I completely accept her experiences are factual i.e. that she had money, that she cant find it anymore, that the neighbour is overfriendly, I do not share her interpretation of the facts and believe that it is more likely that she forgot about it. She agreed with me. And when I asked her whether she knew some old friend who forgot stuff. She agreed again with me. And then she says: But unfortunately it is not true in my case! ;-)

And the same is true for some theories on stuttering...

Stutter Talk on Ethics of Blogging

Have you listened to other people's conversation and it's about you they are talking! It happens to me once, at Indiana University in Bloomington, and they talked about me being anti-social: they complained that I was always in my room studying! What a sad life he has. And this one guy says: Dude, Tom stutters. I just don't understand why he cannot speak fluently! I just do it automatically! And this other guy says: Yeah, and A played chess with him and thought that he was drunk! At this point, I stopped listening for mental health reasons! ;-)

And now they are talking about me again but publicly! Check you Stutter Talk's post on the Ethics of Blogging. I am getting a velvet-gloves-iron-hits on some of my posts, namely The Crackpot Award of Sally Reed and The Resignation of ISA chairman Benny. A few civil comments:

A Pagoclone trial participant reports

I got an email from a participant of the Pagoclone trial. He is one of 300 that participated, and he suspects that he was in the treatment group and saw benefits at the higher dose. He started in April and is now moving to the open label phase, which means that the double blind is finished (as I suggested) and everyone gets Pagoclone openly to see the long-term impact. For long-term impact, you could argue that nobody cares about placebo or not: what works works - no matter how it works.

Here is his report:

I wanted to give you an update as to my experience with the pagoclone study. I've been on it since around April or so. At least I suspect that I have been on pagoclone for at least part of this time. I was initially given a dosage of two pills twice a day, which lasted for the first month and then went down to a dose of one pill twice a day. I do believe that I experienced a modest improvement in my fluency, somewhere around maybe 40% better fluency, and then after the dosage change I experienced a pretty dramatic drop in fluency to almost pre-study levels. At my last visit, three weeks ago, I was informed that I am transitioning from phase 1, double blind study, to phase 2, open label study, and should find myself on the placebo during this 8 week period to accurately transfer to the open label phase. When this occurred, whether real or as a result of being informed by the Dr. that I would be on the placebo, my stuttering increased dramatically and am now definitely at pre-study disfluency levels or worse.
So to sum up, I do believe that I have been on the medication for at least part of the study. I do believe that when I was taking the higher dose my fluency was MUCH better. I do believe that the lower doses and the placebo have had a dramatic effect on my speech to pre-study levels or worse.

Since April I have experienced zero side effects. No headaches, weight gain, sleeplessness, nothing. Of course, I don't have a clue as to what my blood work shows but am sure if there was a problem, then the clinic would have most likely informed me.
Overall, I have been happy with the results from the first part of the study and would definitely purchase this medication at the higher dosage level. At the lower level, if the price was cheap enough I would purchase the medication but it would have to be cheap as the rewards were minimal.

I hope this gives you some idea as to how the medication is working for at least one person.

Breakthrough: Stuttering Risk Factors

Finally some breakthrough research!! Swiss researchers, Ajdacic-Gross et al, have been able to link occurance of stuttering in Swiss conscripts to premature birth, probable attention deficit hyperactive disorder, alcohol abuse of the parents, obsessive-compulsive disorder in parents and relatives, having a disabled mother and having a parent from a foreign country. And I am not surprised that there are no overwhelmingly strong risk factor; all odds ratios are about 2 or below. They looked at a large database of 10'000 people, and probably had about 100 stutterers. And then they run a statistical test on the dataset to see whether stuttering is correlated to variables recorded or reported. Of course, there is always the danger