Are stutterers the new untouchables?

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

Thanks goes to Eric for making me aware of:

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

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

Here is the link to an online petition.

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

On causality, correlation, experience, and interpretation of experience

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

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

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

Here is the resolution:

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

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

The King's speech movie

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

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

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

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

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

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

A cheap alternative to Speech Easy

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

A new documentary on stuttering

Check out the documentary by Joke Nyssen: here.

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

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

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

Contact info: sophimages@skynet.be

More genes found.

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

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

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

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

Raza MH, Riazuddin S, Drayna D.

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

Abstract

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

Effective in eliminating stuttering??

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

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

Rosalee's reply:

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

Questions on Lidcombe / early child intervention

A reader left some challenging questions for me:

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

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

My recommendation

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

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

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

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

2) No treatment or Lidcombe treatment?

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

The pseudo-evidence of Shenker

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

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

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

 and further

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

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

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

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

Good news for brain imaging research.

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

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

Awarded grant: Sexual dimorphism of neural development underlying childhood stuttering

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

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

Dr. Patricia Zebrowski is a brain

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

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

Genetics, developmental, and environmental

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

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

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

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

ISAD13 conference

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

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