Friday, September 30, 2005

IFA 2006 Conference

The deadline for abstract submission for the IFA 2006 Conference is TODAY. The conference is probably the biggest conference on stuttering. IFA is the Internation Fluency Associations, an organisation for everyone interested in fluency disorders. Note that ISA is the International Stuttering Association, the umbrella organisation of the national associations. I am not a member of IFA yet. But the conference fees are lower for IFA members, so I might join!!! :-)

I am currently working on two submissions. The first one is for a presentation on the statistical analysis of outcome data of early childhood intervention, and the other one is a 1-hour workshop on Using the Internet for Research. Unfortunately, I dont have time to convince someone else to join in in the workshop....

Thursday, September 29, 2005

BUKO - first day - continuation

I am now back home. After BUKO, I attended another conference, in Frankfurt and on hedge funds: you know those people who make millions on the stock market! :-) Let me talk a bit more about the first day at BUKO.

In the afternoon, there was a discussion panel and presentations. First, representatives from different therapies answered questions on stuttering and described their respective therapies. There was a representative from the self-groups, Andreas Starke advocating van Riper approach, Alex von Gudenberg advocating a fluency shaping therapy, and a speech and language therapy advocating "Individual Psychology" (IP). IP has certainly provoked the strongest reaction from both panel members and audience. So let me talk about it.

I found a description on "Individual psychology":
Stottern ist aus individualpsychologischer Sicht eine Neurose. Dabei wird davon ausgegangen, dass die Diagnose Neurose dann berechtigt ist, wenn Krankheiten und Krankheitssymptome als Alibi verwendet werden, um soziale Mängel zu entschuldigen. Der Titel „Ja ..., aber“ steht deshalb für eine neurotische Formel, deren Antwort immer „Nein“ lautet, z.B.: „Ja, ich würde noch ein neues Studium anfangen, aber mit diesem Stottern ist das unmöglich.“
Die Ätiopathogenese des Stotterns ist weiterhin unklar. Es ist auch nicht eindeutig erwiesen, ob Stottersymptome immer primär auf der Basis einer neurotischen Fehlentwicklung entstehen. Unbestreitbar ist jedoch, dass jeder stotternde Patient psychosomatische Persönlichkeitsstörungen hat und Stottersymptome oftmals unbewusst oder bewusst eingesetzt werden, um einen sekundären Krankheitsgewinn zu erzielen. Dies führt dann zwangsläufig zu einer kontinuierlichen Fixierung der Symptomatik. Hier sind individualpsychologische Therapieansätze, insbesondere bei Erwachsenen, äußerst hilfreich. Grundlage der individualpsychologischen Sichtweise ist dabei, dass Stottern als Ausdruck frühkindlicher Entmutigung in den ersten fünf bis sechs Lebensjahren entsteht und so ein bestimmter Lebensstil entwickelt wird, der das Verhalten des Menschen im Verlauf seines Lebensweitgehend bestimmt. Wenn es daher gelingt, den Patienten in die Lage zu versetzen, seine individuelle Problematik zu erkennen und seinen Lebensstil zu analysieren, ergibt sich daraus auch die Möglichkeit, Verhaltensmodifikationen zu erreichen und so auch die Stottersymptomatik günstig zu beeinflussen.

Here is a quick translation:

In the IP framework, stuttering is a neurosis. A diagnosis of a neurosis is justified whenever illness and symptoms of illness is used as an alibi to cover for social defficiences. The title "Yes,.. but" stands for a typical sign of neurosis, e.g. "Yes I would like to go to university but it is impossible due to my stuttering". The mechanisms and causes of stuttering are still unclear. It is not clearly proven that stuttering symptoms always start out as neurotic developments. However, unquestionably every stuttering patient has psychosomatic personality troubles and that stuttering symptoms are often unconsciously or consciously used to obtain secondary gains. This leads to a obsessively continuous fixation on symptoms. In this respect, IP therapy approaches prove to be very sucessful. According to IP, stuttering in childhood is a symptom of early disencouragement in the first 5 to 6 first years which leads to a specific lifestyle that determines a human's life. If the patient is able to acknowledge its individual problems and lifestyle, a possibility opens up to change his behaviour and reduce the stuttering symptoms.

This approach did not prove very popular with the audience or panel members. Especially Andreas Starke dismissed it strongly and came examples. Also, a woman stood up and was visibly upset by what she thought was a completely ridiculous theory. She said that she stuttered not because of any deeper psychological problems or of problems bigger than that of the average person, she was just unable to translate her thoughts into speech. And that she was not deriving any open or hidden advantages from stuttering. But there was another member of the audience who said that he is convinced that stuttering is due to fear in the first place.

So what does Tom think? I actually spoke with two therapists doing IP during lunch. I really had the impression that they felt a bit on the defensive. I explained to them that I think that one must separate between therapy and theory. The troubling thing about IP is really that it makes clear statements about the nature of stuttering, which I can honestly not support. In fact there is much evidence against it like genetic predisposition, brain imaging studies showing structural problems, good results of the Lidcombe problem, etc. Having said this, I am NOT saying that IP is a useless therapy, on the contrary. Many aspects, including reviewing one's constructs and how stuttering affects them, are useful to reduce the handicap that stuttering brings with it. As I said many times before, the biggest handicap does not come from disfluency but from the social and pyschological SECONDARY effect. And IP does deal with them. So in my view, the therapy is OK but based on a wrong and outdated theory.

Friday, September 23, 2005

BUKO - first day

The first day of the BUKO is finished. There was a long, very long discussion round on therapies. Several German therapists introduced their own therapy, and answered questions regarding the nature of stuttering and what can be done. The therapies were a fluency shaping therapy (von Gudenberg), a van Ripper (Starke), a speech therapy / psychotherapy. I must go. I have not credits left!!!

Wednesday, September 21, 2005

Reporting from BUKO 2005

I will be reporting from the German self-help association's annual conference BUKO 2005 in Goettingen. I will drive there with Einar, who is also from Luxembourg but of Islandic origins.

Dr Martin Sommer invited me to the annual congress to talk about therapies in Luxembourg and England. But we decided that I will talk about therapy research in general, because Rachel Everadt (chair of BSA) speaks on the UK and the situation in Luxembourg is anyway similar to Germany, France or Belgium, except maybe that the health insurer typically pay for therapy without asking too many questions.

In my short presentation, I will list and explain the key concept to conduct therapy research (like relapse, how to measure success, etc), and why it is so difficult to do. I will also mention PEVOS which is an Germany-wide initiative to evaluate therapies. I have not finished the talk yet...

Response to Trish's message

Trish has posted a message, and I would like to comment. If you want to know more about her ideas, check her website.

I take issue with the way she is presenting her arguments.

I take issue with no 2:
"The people who do Lidcombe therapy have no precise understanding why it should work, apart from some general intuition that targeted practice and "pressure" will change the children's behaviour."

Rather insulting to some of us who actually work or have worked in the field.
Fallacy No. 1: It is completely irrelevant to the strength of an argument whether someone feels insulted by an argument or not. If someone tells me that I am ugly, it is surely insulting but that doesnt make me beautiful (if I am ugly)! There is nothing more harming to an open scientific debate that loading upon the proposer of an argument social guilt/pressure e.g.: It is insulting for you to say that, You are questioning my professional conduct by saying that, How would you feel if I said to you that.

Lidcombe works because it removes tension and repetitions which result from the tension.
Fallacy No. 2: Using vague terminology and making unfalsifiable statements. What exactly is tension? How do you measure it? Why do repetitions result from tension? How can you test that repetitions result from tension? Where is the literature that supports it? Which experiments can be made to prove it?

The excess tension begins because there have been sudden changes or difficulties in the child's life - a new sibling has arrived, a parent has disappeared from the scene...
Fallacy No. 3: Confusing correlation with causation. If two events are correlated, it does not mean that there is a causal link between them. If I meet you in the centre of London, it is mostly likely by chance (and it is not a proof of the theory that I am following you on purpose). Sudden changes in a child's life always happen, and onset of stuttering at around 3 also happens. And they might by chance happen at the same time. A counterexample: There are millions of kids who had sudden changes in their early life, and they did not start to stutter. Why not? Or they did stutter but it went away for 80%. Why only for these 80%? And it not good to say that these kids handle tension in other ways, because then you have not explained the mechanism how in some kids tensions lead to stuttering.

A three year old came to me with his mother and baby sister. We discussed, in front of him, changes to his life. His mother had been aware that he was upset that his father was working away - so upset that he would not even talk to his dad on the phone. He was upset too that his father gave more attention to the baby because she did not reject him. We were sympathetic and, quite frankly, I told him not to stammer. He never stammered again.

His mother said he stopped stammering in the car on his way home. The family gave him and his problems proper attention. It's not that he was attention seeking - rather, the discussion reassured him that all was well and that he was well-loved
Fallacy No.4: Anecdotes never make good science. This could have just happened by chance at the same time. So you need to have many observations to exclude the chance factor. Moreover, anecdotes are never reproducable by other researchers. Trish herself relies on testimony by the mother. The observations might give an indication of a relationship but certainly not a proof.

Thursday, September 15, 2005

Gone for a few days and then to BUKO

I am gone for a few days, but as usual I take some PDS literature with me! :-) Next week I will attend the German association's annual conference called BUKO: check here. I am invited to speak and participate in a discussion round on therapies. I am representing Luxembourg, and also England partially.

Tuesday, September 13, 2005

How good is Lidcombe?

I admit that I am not an expert on the details of the Lidcombe therapy. So please correct me when I go off stage. But here are some (possibly controversial) thoughts:

1) I am still not 100% convinced that research has conclusively shown that the Lidcombe therapy gives lasting and clearly-above the natural recovery rate fluency to dysfluent kids.

2) The people who do Lidcombe therapy have no precise understanding why it should work, apart from some general intuition that targeted practise and "pressure" will change the children's behaviour.

3) Any intervention (whether Lidcombe or something else) might have an effect.

4) Politically speaking, Lidcombe is wonderful whether it is effective or not. And I tell you why. Parents dont want people like me telling them: "Well, 80% recover anyway. There two approaches. One say X and the other says Y. Lidcombe might be good but who knows" They want CERTAINTY: "Yes, we can solve your child's problem. And we tell you how to help them." And even if this certainty is completely misguided. The absurd fact is that 80% of the parents will be very satisfied! Their thinking goes: "our child did Lidcombe - problem solved - Lidcombe is an effective therapy".

5) Intuitively, Lidcombe could well at least partially be a consequence of the male big belly phenomenon. You tell them: "You have a big belly". And they strengthen their stomach muscles and the big belly is suddenly gone. No big belly anymore! Hey. But then after a while, the big belly comes back. And so to Liddcombe. The big belly is the dysfluency. The Lidcombe therapy is the "pressure" or "re-enforcement" of a different than naturally developed behaviour. And it could well be that after this period the child goes naturally back to its natural behaviour. But I agree that at this young age the effect for permanent change is greater. But it could well be that some aspects of the child's brain, like speech and language circuits, are hard to change after the age 3 to 4, whereas others like movements, habits, pyschological or social certainly are. So it is very important to follow up the kids over several years after they have left Lidcombe. And any outcome study should study possible relapse too.

6) What part of Lidcombe does the treatment effect?

FINALLY, 7) Research on Lidcombe therapy has clearly shown that the days of Johnson & co are numbered. Where are the kids that should recover less often if you make them aware of their stuttering? Very clearly, giving Licombe to kids does not make them stutter more...that is for sure.

In this light, Lidcombe deserves credit! And the supporter of Johnson & co's approaches to stuttering must seriously review their own thinking, not just for kids but also for adults. NO, stuttering is not caused by self-identity issues (they view themselves as stutterers, if they did not have that view, they would not stutter). Stuttering causes people to develop an too unrealistically negative view of themselves as speakers that their speech impediment forces on them.

Saturday, September 10, 2005

Against everything we believed in

Lidcombe has first been heavily critised by many, but nowadays the therapy is The Answer to childhood dysfluency for many. I tend to believe that both are wrong (but Lidcombe is less wrong that the others) and that I have no answer either!!! :-)

It is intriguing that the Lidcombe approach is a 100% contradiction to the old ways of doing things: let me call them psycho theories (for simplicity - and I dont deny psycho influence in PDS). Johnson, Sheehan, and Bloodstein have said in the past that
Stuttering is a disorder of the social presentation of the self. Basically, stuttering is not a speech disorder but a conflict resolving around self and role, an identity problem. (Sheehan)
Extrapolating, one conclusion is that parents' intervention and attitude towards a child's dysfluencies causes stuttering. Many children go through a normal period of dysfluecnies. Parents make them aware of these dysfluencies. The children (and parents) get more anxious and therefore stutter even more and keep on stuttering. Thus, many therapists and doctors in the past urged parents to avoid whenever possible to make their children aware of their dysfluencies.

You can imagine that the "establishment" (I love conspiracy theories... :-) was not very pleased to hear about the Lidcombe therapy that instructs parents to do what supposedly causes adult stuttering! I do admit that the parent psycho theory is quite elegant and makes a lot of sense and explains why some children do not recover from dysfluencies, namely their parents, so it is a shame that the theory is dead wrong! For several reasons:

1) Lidcombe therapy does at the very least not produce more stuttering teenagers than natural recovery. If the parent psycho theory were true, many more kids should keep on stuttering!!! So even if Lidcombe does not have a treatment impact, at the very least it convincingly refutes the parent psycho theory. How can anyone anymore take the warnings seriously that parents should whenever possible avoid telling the child about their disfluency or else their kids face life-long stuttering?

2) Recent research has shown that girls and those without family history seem to recover in greater numbers. So the parent psycho theory need to explain why girls and those without family history are LESS receptive to interactions with their parents?

3) There are many kids who recover who had much greater pressure from their parents.

4) It is a myth that parents have very much impact of their kids.

In my next post, some comments on Lidcombe.

Wednesday, September 07, 2005

How good are your stats?

I am currently looking carefully at the statistics of the Lidcombe study. I have already done some work months ago. The big big problem with evaluating children therapies is that you never quite know whether they recover naturally or due to your intervention. [Another issue is whether the recovery due to your intervention happens faster than the natural recovery.]

For example, let's say the natural recovery rate is 70%. Then roughly 700 kids out of 1000 kids should recover. Let give treatment to 20 kids, and 16 kids recover. This makes a recovery rate of 80%, which is 10% higher than the 70%. But it could well be a statistical fluctuation as you have picked 20 kids randomly for the population of all kids that are dysfluent. So by chance you might end up with 16 kids that will eventually naturally recover. The trick is either large sample size or large treatment effect. Thus, the larger your sample of kids, the less likely the natural recovery rate in the sample deviates from the 70%. And the larger your treatment the clearer you deviate from the 70%. I derived a mathematical formula to compute the chance that a result is a fluke. And the higher the recovery rate of the sample you have treated and the larger your sample size, the lower the likelihood of a fluke. Do you follow me??? :-) You can also do it with a Monte Carlo simulation, but this gets a bit technical!

Here is my rapid response. I found already a small spelling mistake. I hate when that happens. I read it several times and then I sent it off and then I spotted the spelling mistake... I am curious what others have to say about my response. I guess 90% have no clue what I am talking about. So I hope for the 10% to either agree or prove me wrong.

Tuesday, September 06, 2005

What is Lidcombe?

The Lidcombe therapy was developed by Prof. Mark Onslow and others (sorry if I dont have names). It is foremost a behavioural therapy, and tries to change the speech behaviour of the children by enlisting the parents to point out fluent speech and dysfluent speech.

Here is a description of Lidcombe, which I have shortened a bit:

The program is administered by a parent (or carer) in the child's everyday environment. Parents learn how to do the treatment during weekly visits to the speech pathologist. At these visits, the speech pathologist trains the parent by demonstrating various features of the treatment, observing the parent do the treatment, and giving the parent feedback about how they are going with the treatment. This parent training is essential, because it is the speech pathologist's responsibility to ensure that the treatment is done appropriately and is a positive experience for the child and the family.

The treatment is direct. This means that it involves the parent commenting directly about the child's speech. This parental feedback is overwhelmingly positive, because the parent comments primarily when the child speaks fluently and only occasionally when the child stutters. The parent does not comment on the child's speech all the time, but chooses specific times during the day in which to give the child feedback.

As well as learning how to give feedback effectively, the parent also learns to measure the child's stuttering by scoring it....

The Lidcombe Program is conducted in two stages. In Stage 1, the parent conducts the treatment each day and the parent and child attend the speech clinic once a week. This continues until stuttering either disappears or reaches a very low level. Stage 2 of the program commences at this point. The aim of Stage 2 is to maintain the absence, or low level, of stuttering for at least one year. The frequency of parental feedback during Stage 2 is reduced, as is the frequency of clinic visits, providing that stuttering remains at the low level at entry to Stage 2. This maintenance part of the program is essential because it is well known that stuttering may reappear after the conclusion of an apparently successful treatment. (taken from the Australian Stuttering Research Centre site)

Saturday, September 03, 2005

Lidcombe randomized trial

I have decided to become a bit more of a scientist again, which means that I will pick out a few interesting articles and comment on them.

I am currently reading a therapy outcome study on the Lidcombe treatment for children. The article by Jones, Onslow, Packmann et al. is published in the British Medical Journal under the title "Randomised controlled trial of the Lidcombe programme of early stuttering intervention". Look at the abstract. You can also download the pdf file.

As I said many times before, outcome studies are very tricky to do, and on treating children is even more tricky due to the natural recovery rate. Thus, if a child becomes fluent after treatment, was it a natural recovery or the result of the treatment? The only way to do this is to look at a larger sample of children. I will talk about it more in my next post.

Friday, September 02, 2005

Visitor from Pakistan

I just noticed that I had a visitor from Pakistan. If you read this, please post a comment and tell us what is going on stuttering-wise in your country!