Tuesday, September 08, 2009
fMRI: a mixture between neurological or behavioural??
I just had this frightful thought that we could be fooled by the functional brain imaging data. Here is my line of reasoning. Let's assume we have a structural issue (which is in my mind pretty much settled by genetics and structural brain imaging). So your speech system has a tendency to jam. Let's say in 1 word out of a 10. Let's say that the system randomly happened to jam more often on the d-word. I am wondering how the brain reacts to this apparent (but random) pattern. It could well start learning to associate the d-words with jamming. And the next d-words act as a trigger and the brain expects jamming. This expectation could make a real jamming more likely or might trigger the associated behaviors to jamming. So when we put someone in the scanner and give him to read, he might stutter on d-words, and we see a difference in the scans to fluent people. However, it is not clear to me that the functional differences is due to real jamming or just due to a trigger of associations. Let me rephrase: the functional data might be a mixture between abnormal neurological activity and activity due to normal associative learning not present in fluent subjects. This would mean that interpretation of functional data is very very difficult, and might not reflect abnormal function due to structural issues.
Monday, September 07, 2009
Africa is stuttering
If you are interested in what is going on in Africa in terms of stuttering, have a look at the Africa Stuttering website.
Thursday, September 03, 2009
Tackle subgroups
There might well be many different subtypes of stuttering diluting the experimental signal. Finding stuttering genes might not lead to cures, but they help to identify a subgroup. Doing brain imaging on such a gene subgroup should give a better experimental signal.
Stuttering New Year's Eve!
Blanka Koffer from Stuttering etc has asked me to publish this invitation for a stuttering New Year's Eve! Maybe we should join...
Stuttering into the new year
New Year's Eve in the High Tatra Mountains. We have booked a chalet with max 24 people in Ždiar (Slovakia), 15€ per night. People who stutter, their friends and families from anywhere in the world are invited! We speak German, English, and French. Free therapy advice and help available from holidaying clinicians, but let focus on having a good time! Get to know each other and see old friend again, winter sports, and aprè-ski! Arrival until Dec 31th, departure on January 3rd.
Please contact ilona.majtnerova[at]centrum.cz or ritamina[at]web.de!
Tuesday, September 01, 2009
BSA conference, London 2009
I will speak at the BSA conference the weekend after next (September 11th to 13th) in London. I have two one-hour slots, but will try to give 30-minutes talks with plenty of time for debates. I hate those one-way presentations of which I am guilty, too. Of course, feedback from the audience is critical. I will definitely feel stupid if no-one asks a question or makes a comment. But a good reality check; if I have already lost everyone after half an hour, not need to talk another 30 minutes! :-) My talks are on Saturday from 17:00 to 18:00, and on Sunday at 12:00 to 13:00. Not the best times for presentations to entertain and keep awake an audience hit hard by information overload after a full day of program. Not to speak of the instincts to get the buffet first! I hope many of you can make your way to the conference, and challenge me!
The first is on Neurological and Emotional aspects of stuttering.
The second is on Evidence-based Interventions: How Good is the Evidence?
[Appeal for donations: I spend time away from my work, and have travel expenses to cover. If you want to support my work, please consider donating by clicking on the button in the right border. Any amount is appreciated, and shows that you support my work!]
The first is on Neurological and Emotional aspects of stuttering.
Genetics and Brain imaging has confirmed a neurobiological basis for stuttering. But why can we speak fluently at home but not to our boss? Be fluent when singing? Fluent after therapy but relapse later? Suddenly start stuttering without apparent reasons? Surely we have no neurological issues if we can speak fluent?I will present a biopsychosocial model (the one I am writing a book about with a friend of mine) and a model for symptoms to show how a neurobiological basis can account for the wide range of seemingly paradox symptoms. There is no mystery.
The second is on Evidence-based Interventions: How Good is the Evidence?
Treatment should ideally be based on good evidence. Unfortunately, most evidence presented is flawed. I will talk about devices like SpeechEasy, medication like Pagaclone, early intervention like Lidcombe, adult therapy like Hollins Institute or Del Ferro, and highlight that evidence they claim is flawed or non-existent.The text is self-explanatory... So all that remains is for me to write the talks!!! :-(
This workshop should be useful to consumers and also therapists to better understand the traps and loopholes in evaluating evidence.
[Appeal for donations: I spend time away from my work, and have travel expenses to cover. If you want to support my work, please consider donating by clicking on the button in the right border. Any amount is appreciated, and shows that you support my work!]
Wednesday, August 26, 2009
ISA needs a new chairman that has the confidence of everyone
Not all is well at the International Stuttering Association. Suzanna's no-holds-barred interview brought into daylight the tensions within the ISA board which have been simmering for months. Benny, the current chair and among those heavily criticized by Suzanna, wrote in his editorial to the June edition of One Voice: "The ISA Chair, just as a self-help group leader, needs to also confront "troublemakers" on occasion. For example there are board members who have been sending an excessive number of emails to the group – that is, they are being too “noisy”..." Did Benny have Suzanna in mind? The situation seems to have reversed now: the troublemaker is confronting the ISA chair. No sharing of information. No fund raising. Resignations of two board members. No access to forum. Personal insults. No reply to emails. And to the shock of all in front of everyone. But she is also critical of Thomas for not being active enough, in Benny's world surely not a trouble maker for he was not too noisy.
It is easy to imagine that Thomas is the perfect board member. Reading Benny's editorial raises the frightful thought that his definition of troublemaker is someone who creates trouble to him and maybe who helds a different opinion. There is no doubt that washing dirty lingerie in public is considered bad style by many. When is whistle blowing effective? A never ending debate. At least, we have a public debate now. Certainly, email comments from insiders to TheStutteringBrain reinforce this view. In their eyes, Suzanna is guilty of disturbing the all-is-well and we-are-a-family attitude for a personal vendetta. Others point to her not-so-perfect own performances. Surely she has disqualified herself from a higher office as they say in politics. But so does Benny who is in higher office. Can we have a chairman who publicly states that there are trouble makers on the board that he leads? No, Benny, you cannot lead an organization as a self-help group. ISA is an umbrella association where each association's representative must have a voice, and the trouble they are creating is often just the expression of a different agenda. It is the chair's responsibility to bring all the board members on board and find a consensus.
But the most devastating and serious critique comes from the British Stammering Association. More specifically from BSA CEO Norbert Liekfeldt, a German famous for his word mincing: "Keith stressed his view that ISA is potentially a worthwhile organisation - however, under current circumstances he felt he could achieve more outside ISA than within its structures. We wrote formally to the ISA Board and Chair to express our concern and stated that, for the moment, we would not wish BSA deleted as a member organisation from the ISA website. However, we were keeping this under review." So here we have one of, if not the, most professionally run national stuttering association, active for many years with full-time staff and recipient of the IFA consumer award 2009, effectively saying that ISA is run badly, that their representative has given up on ISA as it is now and that the only thing that prevents them from leaving is that ISA is potentially a good idea! Can it get any worse? Yes, as long as people criticize each other, they care as Suzanna does. But the BSA, and I can only confirm this view as an ex-BSA trustee, cares little. The prevailing view is and has been that ISA is largely run by a few enthusiasts who have little management experience, mostly care about their own agenda, love giving talks about themselves and travelling around the world. But let's pay the dues anyway; ISA is potentially a good idea... ISA is an umbrella association, and therefore ISA must care for its associations first. And ISA must care for the big and professionally run associations, for only they can provide a stable and continuous support to build up new national associations and thereby helping people who stutter.
There is only one solution to the current dilemma. ISA needs a new start: a new chair that has the confidence of everyone and the ability to make the big associations care for ISA and get them involved in their umbrella association. Benny needs to go, Suzanna has spoken enough in public, and Thomas has been there for far too long to be still motivated. Now it is time for the national associations to show that they care deeply about all people who stutter worldwide, and do what they have to do, for it is their organisation!
Monday, August 24, 2009
Thanks Dave
I want to thank Dave for his conference reporting and pictures. If you want to be a guest blogger on a topic or conference, write to me!
Sounds like there is not much new stuff going on, apart the ISA controversy of its chairman. I will comment on the controversy in my next post.
Regarding Dave's conference reporting, a few thoughts
1) What does cluttering have to do with stuttering? Can we really learn something from cluttering for stuttering? Even Per Alm is into cluttering now...
2) I still don't like all this temperament stuff, and the perfectionism link. A complete misguided area of research if you ask me! Far too vague and linked to subtypes for any serious quantitative research. Except this emotional control concept, I can see how this might interfer with treatment.
3) I share his view that most research presentations are too preliminary and not really worth talking about. I always say: do it properly or don't do it at all, or just talk about your experiences. Especially for therapists/clinicians, it's a real cancer. (As a side note: Let me say it clearly: you simply have no clue how to do real research. Why don't you just talk about your experiences as a therapist, about the methods you have used and the reactions you got from the patients. I am not interested in something that vaguely looks like scientific research only because you have used a t-test or similar. Stick with what you do in your day job.)
Sounds like there is not much new stuff going on, apart the ISA controversy of its chairman. I will comment on the controversy in my next post.
Regarding Dave's conference reporting, a few thoughts
1) What does cluttering have to do with stuttering? Can we really learn something from cluttering for stuttering? Even Per Alm is into cluttering now...
2) I still don't like all this temperament stuff, and the perfectionism link. A complete misguided area of research if you ask me! Far too vague and linked to subtypes for any serious quantitative research. Except this emotional control concept, I can see how this might interfer with treatment.
3) I share his view that most research presentations are too preliminary and not really worth talking about. I always say: do it properly or don't do it at all, or just talk about your experiences. Especially for therapists/clinicians, it's a real cancer. (As a side note: Let me say it clearly: you simply have no clue how to do real research. Why don't you just talk about your experiences as a therapist, about the methods you have used and the reactions you got from the patients. I am not interested in something that vaguely looks like scientific research only because you have used a t-test or similar. Stick with what you do in your day job.)
I expect visitor level to level at 100'000
I had a look at the historical hits on my blog. The visits more then doubled each year with 65'000 visits in 2008. The visits in 2009 stand at 43'000 for 7/12 of a year which makes about 75'000 estimated for 2009. I expect that the visitor level will only raise marginally and level out at about 100'000 a year; assuming I keep blogging.
Of course, blogs fall and rise with the content and frequency of content presented. Don't post for 1-2 weeks and the numbers fall dramatically.
Sunday, August 23, 2009
Dave - Conclusions from the Congress
Paul Brocklehurst

Now that the Congress is over, it's interesting to look back on it and provide some sort of summary, or perhaps conclusion. First, was there anything really new? I'd have to conclude, not really. It seems to me that at most conferences there is not a lot which is really new presented. On the other hand there were some interesting papers. Jerry Maguire and Nan Ratner's talk was excellent and highly entertaining - they make a great double act and I like where stuttering is heading in DSM-V if they get their way. I particularly liked the paper by Paul Brocklehurst on the potential link between stuttering and perfectionism. It wasn’t clear from his data that PWS were more “perfectionist” than non-PWS, but it seems like an idea worth pursuing.
Shelly Jo Kraft gave an excellent paper on “Temperament, life events, and home environment in developmental stuttering severity”, which formed the basis for her PhD research. She argued that children with high effortful control (EC) can cope with changes in their environment. According to her, Effortful Control is the ability to ignore something distracting, like the TV and concentrate on what you want to do, e.g. reading. She argued that stuttering children with high EC may be able to attain more fluent speech. There was also a very useful presentation on the use of the speech analysis program PRAAT for timing and tallying dysfluencies by Paul Corthals. Having used PRAAT I can verify that it is a very powerful program.
I also attended the presentation by Peter Lajos entitled “Case Study of a 13-year-old Boy with Depression and Stutter”. This took essentially a psychoanalytic approach and as a single case study was very different from most of the other presentations. Whilst I don't generally favour a psychoanalytic approach I thought it was excellent, reminding us of the need for SLTs to understand individuals and their thoughts and of the need for SLTs to have a strong sense of humanity.
There were also several workshops, e.g. "A Brief Introduction to Solution Focused Brief Therapy" by Willie Botterill and "The Camperdown Program for Adults who Stutter" by Sue O'Brian. These provided a good opportunity for therapists to learn some practical skills.
Of course, I missed a lot too. Usually there were three or four parallel sessions and of course you have to make a choice of what to listen to. It was made more difficult because we only had the authors and titles to go on - the abstracts were not available. A pity. I imagine many people sat through stuff and wished they’d been in another session.
There was also a lot of very preliminary work included. Here’s one example, my comments in brackets:
"Although no definite conclusions can be drawn from this small (so why not have more?) sample of subjects, the results indicate that 50% (5) of the ten SpeechEasy users had less problems after one year of using the device.. "
(So I guess this means 50% had the same or more problems? Hardly worth reporting is it? And another ten refused to use the device!)
All these preliminary publications are partly because of the trend of Universities to demand more and more publications from their staff. The same thing is happening in journals. It is driving down quality, because there is not really enough good quality research being done - it take a long time, it can’t be knocked out in a couple of weeks. And of course conference organisers are reluctant to reject papers because it means the presenters will not attend, with a loss of income.
Overall though, a very enjoyable Congress. Thank you, John and Monica.
Finally, I’d like to thank Tom for giving me this opportunity to be a guest blogger and never interfering. All the thoughts and words are mine alone.
Now that the Congress is over, it's interesting to look back on it and provide some sort of summary, or perhaps conclusion. First, was there anything really new? I'd have to conclude, not really. It seems to me that at most conferences there is not a lot which is really new presented. On the other hand there were some interesting papers. Jerry Maguire and Nan Ratner's talk was excellent and highly entertaining - they make a great double act and I like where stuttering is heading in DSM-V if they get their way. I particularly liked the paper by Paul Brocklehurst on the potential link between stuttering and perfectionism. It wasn’t clear from his data that PWS were more “perfectionist” than non-PWS, but it seems like an idea worth pursuing.
Shelly Jo Kraft gave an excellent paper on “Temperament, life events, and home environment in developmental stuttering severity”, which formed the basis for her PhD research. She argued that children with high effortful control (EC) can cope with changes in their environment. According to her, Effortful Control is the ability to ignore something distracting, like the TV and concentrate on what you want to do, e.g. reading. She argued that stuttering children with high EC may be able to attain more fluent speech. There was also a very useful presentation on the use of the speech analysis program PRAAT for timing and tallying dysfluencies by Paul Corthals. Having used PRAAT I can verify that it is a very powerful program.
I also attended the presentation by Peter Lajos entitled “Case Study of a 13-year-old Boy with Depression and Stutter”. This took essentially a psychoanalytic approach and as a single case study was very different from most of the other presentations. Whilst I don't generally favour a psychoanalytic approach I thought it was excellent, reminding us of the need for SLTs to understand individuals and their thoughts and of the need for SLTs to have a strong sense of humanity.
There were also several workshops, e.g. "A Brief Introduction to Solution Focused Brief Therapy" by Willie Botterill and "The Camperdown Program for Adults who Stutter" by Sue O'Brian. These provided a good opportunity for therapists to learn some practical skills.
Of course, I missed a lot too. Usually there were three or four parallel sessions and of course you have to make a choice of what to listen to. It was made more difficult because we only had the authors and titles to go on - the abstracts were not available. A pity. I imagine many people sat through stuff and wished they’d been in another session.
There was also a lot of very preliminary work included. Here’s one example, my comments in brackets:
"Although no definite conclusions can be drawn from this small (so why not have more?) sample of subjects, the results indicate that 50% (5) of the ten SpeechEasy users had less problems after one year of using the device.. "
(So I guess this means 50% had the same or more problems? Hardly worth reporting is it? And another ten refused to use the device!)
All these preliminary publications are partly because of the trend of Universities to demand more and more publications from their staff. The same thing is happening in journals. It is driving down quality, because there is not really enough good quality research being done - it take a long time, it can’t be knocked out in a couple of weeks. And of course conference organisers are reluctant to reject papers because it means the presenters will not attend, with a loss of income.
Overall though, a very enjoyable Congress. Thank you, John and Monica.
Finally, I’d like to thank Tom for giving me this opportunity to be a guest blogger and never interfering. All the thoughts and words are mine alone.
Friday, August 21, 2009
Dave - International Stuttering Association - Time for Change?
Interview with Suzana Jelčić Jakšić, board member of the International Stuttering Association
Thanks for agreeing to this interview. Let’s start by asking why you wanted to do this interview and have your views made public.
I don’t think that at the moment ISA is being run as a democratic organisation. It seems that anyone who disagrees with the Chair ends up either being forced to leave or being sidelined, like me. This is my last attempt to get my democratic rights back and be treated equally.
The ISA symposium was a bit of an embarrassment. It looked like there hadn’t been any planning about who was doing what. Is that right?
Yes, that’s very much right. Benny asked me about seven months ago if I'd be a part of it - the title was “ISA and its Role in the Community”. I was to speak on the last World Congress in Cavtat and I obviously agreed. Claudia from Argentina was asked to speak about the next World Congress. I asked for an abstract from Benny in February so I had better insight into what was required but never got it. Never heard from him about it again, despite asking for this information. Until it was published on the IFA web site I did not even know how long the session was. Because there was no communication for several months I was not sure Benny really wanted me to be a part of it.
You seemed to know nothing about the specific plans for an ISA/IFA joint congress?
I knew of previous talks between Chairs of ISA and IFA, but no other discussions. Benny said nothing about such ideas. As far as I know it’s not been discussed anywhere, but Benny presented it there at the workshop as if it was something that was agreed. It was disappointing to me that Benny said nothing about my keynote speech at any time during the Congress despite the fact I was talking about the importance of strong national associations and the ISA and the role of self-help groups. He did not even acknowledge that I had given a keynote speech.
What was that comment Benny made about “I’m at the top and you’re at the bottom” when he put up the list of Board members. It sounded quite insulting. Do you think that was intended?
I noticed that I was at the bottom of the list on the ISA web site, but it did not seem important. But I couldn’t believe my ears and eyes when he commented on the slide like that, particularly since he did it turning to me with a smirk and pointing out personally to me that I should notice that he was at the top and I was at the bottom. And this was translated into Portuguese too. Fortunately there were hardly any people there to hear it, but obviously it wouldn’t have mattered to Benny how many people there were present.
Since the last World Congress it doesn’t look like ISA is a very happy family. Am I right in thinking that Keith Boss resigned and John Steggles was expelled?
Yes. There was the problem with two members, Keith and John. Keith had a lot of ideas that Benny could not follow and both Keith and John had some strong views on what the board should be doing. If they were representing their national associations I don’t understand why they couldn’t be replaced by someone else nominated by their associations. But this didn’t happen. If they were not representing their national associations then the national associations shouldn’t interfere to try to get people removed from the board as was the case presented to the board about John.
According to the ISA web site you have a Chair and Secretary on the ISA board. You also have a Co-ordinator. What does the Co-ordinator do?
Apparently the co-ordinator takes over the discussions when Benny is not ready to answer some questions. But Thomas does not do this in a very concrete way, so often we get no answers to our questions which is very frustrating.
What has ISA done in the last two years? From the point of view of an outsider it looks quite inactive. Apart from publishing three issues of ‘One Voice’, what has it done.?
It’s certainly not good if it’s not obvious to people what ISA has been doing. There’s been the 2nd African Conference, but these conferences were started by the previous Board and people from Africa were responsible for the second conference. There’s the ISP-S project which was started by Mark Irwin and the previous board but to my knowledge the current board did not seem to want to act on any of Mark’s further suggestions for this. ISA supported this with a limited amount of funds. We also spent a lot of time changing the venue of the next World Congress. This is ok, but the work is done very slowly and it is not enough. In my view ISA should be making links with WHO, UNICEF, and other global organisations to further the cause of PWS.
You might not want to answer this, but how does the ISA make any money to run itself? I can’t see any mention of fund-raising activity on its web site.
I’m not aware of any fund-raising activities so I can’t say much more, but I do know there is a fund-raising committee.
It really looks like you and Benny don’t get on. It also looks like he has a sexist approach to women, judging by the way he relates to you. Do you think that’s true?
It’s hard for me to believe because I was not raised in such a society and I never felt any discrimination being a woman, but now I have to admit that might be the case. I can’t imagine Benny treating a man as he’s treated me. I am a board member and I should be treated equally and that’s what we ask for the rest of the world when it comes to stuttering. At the moment I’m not granted access to the ISA forum, where some important discussions about board matters took place, and despite asking for an explanation and access several times Benny refuses to do either. I don’t know what you can do if you ask questions numerous times by email, even go on strike, but the Chair won’t answer the questions. It was suggested by some other board members that we have a drink in Rio to find the way to communicate better, but then you have Benny who pretends he can’t hear me, doesn’t understand me, says it’s not important and treats me in a sexist manner. He says when the time comes I’ll be allowed access to the forum, which seems an odd word to use since as a board member I have the right to have access. So what I should do now? The easiest thing would be to resign, but I don’t want to stand aside because of someone like Benny.
Finally, do you think Benny has done a good job as Chair?
I think I was really generous to Benny, I had a really good opinion and he was really dear to me and when he asked me to stand for election to the Board, I said yes only because of him. I had many urgent jobs to finish and I was exhausted from organising the World Congress and had no interest in being a part of the board. So he asked me to be there. Some time after that, several board members said they were unhappy with the way Benny ran things and wanted me to join them in showing their lack of support for the Chair. But I said no and defended Benny, saying he needed time to grow into the job and they should give him a chance. But the first time I disagreed with him, didn’t say what he expected, I was sidelined. I think with Benny he thinks you are either with him or against him, nothing in-between. Now, especially after meeting him in Rio, I am sure he sees me as his enemy. I don’t think those are the qualities of a good chair. If we are not all in agreement with him, he sees us all as people he is fighting a war against who should be removed. I want to say here that now I don’t think he’s capable of running the ISA. If the Chair can’t communicate well with board members then I don’t see how this board lead by this chair can create a world that understands stuttering. So, Benny does not have my support and I don’t think someone who behaves in public as he behaves whilst representing the ISA is a fit person to be chair. I think he should resign, but I don’t believe he will, he’s taken the role of a general who must prevail against all who disobey.
Thank you for your time and frank thoughts.
Wednesday, August 19, 2009
Dave - Problems in ISA
There was a brief presentation during the ISA workshop on the possibility of a joint IFA-ISA congress in the future from the current Chair of ISA, Benny Ravid. I noticed Suzana Jelčić Jakšić (one of the board members of ISA) looking surprised at this. Although she obviously knew that this general idea had been floating around for several years, she knew nothing of the current discussions and plans. In fact the ISA workshop did not run particularly smoothly - it looked like there were some communication difficulties in ISA, with some of the other presenters not having been briefed by Benny Ravid, who was running the workshop, about their role. I also noticed a rather snide remark from Benny to Suzana when he put up a slide of ISA members, with his name at the top of the list and Suzana’s at the bottom and said “there’s me at the top and you at the bottom.” It definitely seemed like he was intending to insult her. So I’ve got an interview with Suzana coming up where you can find out more about what’s going on in ISA, or maybe what’s not going on!
Saturday, August 15, 2009
Dave - Symposium on Cluttering
The symposium on Cluttering on the final afternoon was excellent. Presenters took various aspects of cluttering and so the audience got a good overall view of cluttering and its history. However, it was obvious that really very little is know about cluttering, if you think we don’t know much about stuttering, then for cluttering it’s about 100 times worse! One of the most interesting papers was by Yvonne van Zaalen from the Netherlands, which applied Levelt’s model of language production to cluttering, specifically the language monitoring aspect of the model. No-one mentioned anything about brain imaging and cluttering. The prevalence of cluttering was discussed by Ken St. Louis. This was more preliminary work than a full-blown prevalence study. However, it did highlight the relationship between cluttering and stuttering. Cluttering and stuttering do seem often to occur within the same individual, which poses an interesting problem concerning what aspect of speech is being monitored by individuals who both stutter and clutter, given that one of the points often mentioned is that people who clutter are often not aware of the problem.
Friday, August 14, 2009
A miracle has happened
Here is the first document on early intervention (from the NSA) that is not obviously wrong or over-hyped à la early Lidcombe claims. The website identifies as source Larry Molt. Congratulations.
I like this describtion, because there is no talk about brain plasticity and other scientific concepts used in a vague manner and no talk of treatment being able to change the brain. If genes or a neurological incident are involved, the brain will never recover per se but can only adapt to syptom-free speech at best. They focus on the clearly treatable emotional reactions and ensuing complications.
Again, they do not say that treatment will have an effect on fluency but that it can have an effect. And they argue well for treating children early.
Early intervention is important and effective. When a physician identifies stuttering in a young child, or is unsure if a disfluent speech pattern is indicative of stuttering or normal nonfluency, referral to a speech-language pathologist for an evaluation is appropriate and vital. The earlier that stuttering behavior can be identified and effective treatment strategy put into place, the less likely that the child will acquire the negative emotional reactions to stuttering and experience the ensuing complications and exacerbation.
I like this describtion, because there is no talk about brain plasticity and other scientific concepts used in a vague manner and no talk of treatment being able to change the brain. If genes or a neurological incident are involved, the brain will never recover per se but can only adapt to syptom-free speech at best. They focus on the clearly treatable emotional reactions and ensuing complications.
While the high recovery rate seen in children may tempt one to advise parents to wait and see if the child outgrows the problem, there is no assurance that the child will outgrow it. For the 20% to 40% of children for whom stuttering continues into gradeschool and adolescent years, the lost time during the early stages of the development of the disorder may significantly complicate the treatment picture. For young children, treatment by a speech-language pathologist often includes identification of risk factors, education of the parents, management of possible environmental influences, and adjustment of speech production patterns. These strategies typically have a positive effect on stuttering and can help return the child to a normal fluency pattern.
Again, they do not say that treatment will have an effect on fluency but that it can have an effect. And they argue well for treating children early.
For older children and adolescents, treatment strategies may also incorporate much more direct work on speech production and speech management techniques, such as slowing speech rate and simplifying linguistic and speech production patterns. Some professionals may also teach self-monitoring and self-management strategies, as well as acceptance and non-avoidance of stuttering and speaking situations. Similar treatment strategies are used with adults. Treatment strategies for adults may also include pharmaceutical management of some aspects of the disorder, and the use of assistive electronic feedback devices.
From time to time, radically different treatment strategies may appear in the literature or in the media. As with treatment of any other disorder, such strategies should be considered in light of empirical support. Speech-language professionals can often provide suggestions and guidance relative to new treatment approaches.
Thursday, August 13, 2009
Churchill and More myths on stuttering
Check out the Churchill society. A John Mather, M.D. aims to dispel the notion that Churchill stuttered and reveals himself as a true non-expert.
We know a lot about those who are stutterers as to how it can be induced in children through constant badgering to speak correctly. This is particularly true for susceptible children who have problems with their own self-esteem such as orphans. Effective treatment usually involves some form of short-term psychotherapy to improve assertiveness along with exercises in diction. One thing we probably know about Churchill is that he had little or no problem with asserting himself: a very secure ego!
Completely wrong on all points. Stuttering is not due to constant badgering. Orphans are not more likely to stutter. And short-term psychotherapy has ZERO long-term effect on fluency itself in most cases. So Churchill couldn't stutter because of his very secure ego? Non-sense. I have the perfect example: MYSELF! ;-) As the readers of TheStutteringBrain have surely noticed, Tom has a very secure ego, but I still stutter! So theory defeated! And Mather is a medical doctor??? Wow...
Leys from the British Stammering Association has written to them and asked for correction. I am hopeful that they will change their mind after considering the overwhelming facts. After all, they are not involved in stuttering treatment in any way.
Of course, we do not know for sure whether Churchil really stuttered or not. I am on the fence as I have not looked at historical sources. But this website seems to do a good job in proving the case though the editor of the Churchill society website disagrees.
(Thanks to Peter for the tip!)
Saturday, August 08, 2009
Dave - Reception
Delegates enjoying the music.
Paul Brocklehurst From the University of Edinburgh
And here's me at the opening reception. It looks like it's already been too much for one delegate!
Dave - Opening ceremony
Dave - IFA Reception
The show’s on the road! The opening ceremony was good - brief and to the point. Willie Botterill, IFA president, gave an amusing talk and we were of course introduced to all those who made the conference possible. After that we had drinks in the court yard in the open air and got to see who else is here - no list of delegates, which seems unfortunately to be increasingly the case at conferences. Total number of delegates is about 140. Nothing like as many as Dublin or Montreal, where there were nearly three times as many. Had a chat with several people, including John van Borsel, one of the organisers, who said he’d never heard of this blog! Also saw Margaret Leahy, from Dublin, Hilary Liddle and Sarah James from Leeds, Yvonne van Zaalen from the Netherlands, Ken St. Louis from the US, Pete Howell from London, Suzana Jelčić Jakšić (one of the keynote speakers, always good to know the keynotes are here!) and lots of other people.
Wednesday, August 05, 2009
Dave - Social Anxiety and DSM-V
Arrived in Rio safely after a terribly long flight. I managed to do a bit of work on the plane, but the space is so small it’s really cramped typing. And of course there’s no power to recharge the battery in economy! I can see the advantage of business class, apart from the extra cost, of course.
After the queue at passport control I got a taxi to the hotel. Pleasant room and if I stand on the balcony and look down the street I can see the Atlantic.
Spent most of yesterday putting the finishing touches to my presentation. Tonight is Registration and Welcome, so I’ll get some idea of how many people are attending. Be interesting to see who’s here from Europe.
In my paper I’m touching on social anxiety disorder and stuttering. One of the problems, which Mark Irwin refers to (Stuttered Speech Syndrome), is that DSM IV (Diagnostic and Statistical Manual of Mental Disorders) excludes a diagnosis of social anxiety disorder if the anxiety is mainly focused on symptoms associated with the stuttering ( and also other conditions such as Parkinson’s Disease). I’ve known for some time that DSM V is currently being produced, but primarily in secret. You can see some of the debate here: MIWatch and here: Wall Street Journal. The official web site is here: APA.
Which all goes to show that: a) psychologists and psychiatrists just don’t get on, b) the more secret things are, the more suspicious everyone is, c) don’t hold your breath that there will be much new about stuttering here if everyone is bickering amongst themselves!
If anyone knows anyone on any of the panels involved in this revision some lobbying may be in order.
Saturday, August 01, 2009
Memes, biopsychosocial model, disorders and psychotherapy
I am so sorry, Stuttering, I am having an affair with another topic. I am currently writing a book with Gilles, an old schoolfriend of mine who also happens to have a PhD in psychology, was president of the Luxembourg Psychology Association and is a lecturer/researcher at the University of Luxembourg. We met by accident a few years ago and met regularly to discuss neuroscience, especially consciousness. We then moved on to look at The Meme Machine by Susan Blackmore. And we have decided to write a book on memes and use the meme concept in creating a concrete biopsychosocial model which we want to apply to psychology, disorders, and especially psychotherapy.
A month ago, we have recruited four undergraduate student assistants who work on the different subtopics: memes, biopsychosocial models, and psychotherapies. We hope to have the book finished by the end of the year. I also believe that the biopsychosocial model we have come up with should be very helpful in understanding the different aspects of stuttering in a more efficient way, too. So, my dear Stuttering, I won't leave you despite everything.
Friday, July 31, 2009
Dave - Guest Blogger

Tom has asked me to be a guest blogger while I'm attending the 6th World Congress on Fluency Disorders in Rio De Janeiro in Brazil. This runs from the 5th to the 8th of August. I'll be giving a paper myself, co-authored with Suzana Jelčić Jakšić and Behlul Brestovci, on the relationship between Social Anxiety and Stuttering Severity. Of course, I want to find out what else is happening and I've already made a note of several presentations I want to attend. But first I have to get there - a flight from Heathrow at 6:20 am on Monday, change in Madrid and then straight to Rio, arriving at 17.35 local time. Glad I have a day to recover! More later! Dave
Guest Blogger: Dave Rowley
Dave Rowley has agreed to be guest blogger for the International Fluency Association Congress in Brazil which is held from August 5th to 8th. Dave is the organizer of the Oxford Dysfluency Conference, and a lecturer in psychology at de Montfort University in Leicester.
If you want to be guest blogger for an event or a topic, please send me an email.
We need your opinion
I got a request by Suzana Jelčić Jakšić. She prepares for her presentation at the International Fluency Association Congress in Brazil please let her know what you think are the three most important needs for people who stutter in your country. Email your answers to suzana.jelcic-jaksic at zg.htnet.hr.
Thursday, July 30, 2009
Amygdala, the cause of stuttering?
Time and Time again, I hear that the amygdala is causing stuttering. I am convinced the amygdala is not at the origin of stuttering and completely normal in stutterers rather a neurobiological instability of the systems involved in speech leads to stuttering and additionally provokes maladaptive learning by the amygdala that makes stuttering more severe and prone to relapse. So yes it is involves but it is normally functioning; we also do not say that the arm that holds the knife and stabs you in your back is dysfunctional!
On the other hand, stuttering therapies will benefit from understanding how to erase or over-write maladaptive associative learning by understanding how a normally functioning amygdala learns.
Do we stutter when we talk in our sleep?
Are we also stuttering when speaking in our sleep? Any feedback? Ask your partner and let me know! :-)
Wednesday, July 29, 2009
The Sally Reed saga
You might have noticed that my Crackpot Award to Sally Reed has let her to take off her wrong claims on the origin of stuttering and on the efficacy of hypnosis in curing stuttering. The link to stuttering from the main page is not present anymore, but the page still exists. However, she changed this page and now only suggests that one should call her. So will she then repeat what she took off? In any case, I am happy that she has removed the wrong claims, and I hope that she now realizes her mistake. If she has, I will congratulate her for being able to assess the evidence and to change her mind. If she publicly says so, I will remove the Award post.
On the other hand, what you do not know is what went on in the background. She went berserk and has sent a few angry emails to myself, a reader who sent her an email pointing out her award, and an academic who has sent her an email before my post regarding her website. She kept on saying that hypnosis is useful, which really no-one is disputing in some cases. In the emails, she threatened to sue us all, but focused on the academic because we two others are located in Europe and independent. She then went silent. And then on top, she called the academics' department and university and complained! And the academic was forced to come in and explain to the heads and administration! That's all I know... no more news...
So her retreat from the website could be a tactical one to cover herself and launch a lawsuit against all and further the attack. Or maybe she has actually calmed down and realized that the scientific evidence is against her.
So what's the lesson? I live a dangerous life for speaking out and as an academics it's always best to shut up.
On the other hand, what you do not know is what went on in the background. She went berserk and has sent a few angry emails to myself, a reader who sent her an email pointing out her award, and an academic who has sent her an email before my post regarding her website. She kept on saying that hypnosis is useful, which really no-one is disputing in some cases. In the emails, she threatened to sue us all, but focused on the academic because we two others are located in Europe and independent. She then went silent. And then on top, she called the academics' department and university and complained! And the academic was forced to come in and explain to the heads and administration! That's all I know... no more news...
So her retreat from the website could be a tactical one to cover herself and launch a lawsuit against all and further the attack. Or maybe she has actually calmed down and realized that the scientific evidence is against her.
So what's the lesson? I live a dangerous life for speaking out and as an academics it's always best to shut up.
StutterTalk gets better
You need to watch StutterTalk's interview with Marjorie Rosenthal Foer. I have said many times before that StutterTalk is doing a great job by giving others the space to express themselves. But they are a bit like Larry King; letting their guest their opinion if they are wrong and not confronting people with counter opinions. (Of course, the guys themselves have great debates.) This time they were more forceful in having a real debate and asking good probing questions to Marjorie. Well done! Here is the link.
Tuesday, July 28, 2009
NSA conference 2009: Genetics
There was a research symposium at the NSA conference 2009. A Stuttering Brain reader sent me his notes and comments. If you have more, please send them to me. You can also order a DVD, but I wonder why they don't just put them on Youtube for everyone to see. Behnaz also blogs about the symposium here but I am absolutely not impressed by her summary which seems more like parroting the announcement and meaningless hyping and repetition "...invited five top researchers who represent the “who’s who in the world of stuttering." I hope her promised in-depth summary will be real journalistic work.
The most interesting and scientifically most rigorous talk was surely from Dennis Drayna, the leader of an NIH genetics team entirely dedicated to revealing the genetics of stuttering. Jerry Maguire, the chief investigator for the Pagoclone, was also there, but the trials are still running and an article for Phase IIa is still nowhere to be seen in a journal and other reports are fuzzy at best. Larry Molt had the audacity to talk about auditory devices (so I heard), but at the same time he has ignored emails from several different people asking him about the results of his studies but has time to attend conferences, obviously not having published the research study anywhere in a journal for the wider public after more than 5 years and providing actively or passively a cover to Speech Easy to hide the lack of evidence on Speech Easy; unacceptable and unprofessional behaviour in my mind and in the minds of others who as usual dare not to speak out for political reasons. I would like to know what he said in his talk.
I will just focus on genetics based on previous talks I saw and on a reader's notes:
The most interesting and scientifically most rigorous talk was surely from Dennis Drayna, the leader of an NIH genetics team entirely dedicated to revealing the genetics of stuttering. Jerry Maguire, the chief investigator for the Pagoclone, was also there, but the trials are still running and an article for Phase IIa is still nowhere to be seen in a journal and other reports are fuzzy at best. Larry Molt had the audacity to talk about auditory devices (so I heard), but at the same time he has ignored emails from several different people asking him about the results of his studies but has time to attend conferences, obviously not having published the research study anywhere in a journal for the wider public after more than 5 years and providing actively or passively a cover to Speech Easy to hide the lack of evidence on Speech Easy; unacceptable and unprofessional behaviour in my mind and in the minds of others who as usual dare not to speak out for political reasons. I would like to know what he said in his talk.
I will just focus on genetics based on previous talks I saw and on a reader's notes:
- 50% have a family history i.e. genetics component.
- other half unknown but could probably neurological incident like perinatal hypoxia
- severity varies significantly within and across people though genetics component is stable.
- stuttering therapy can eliminate but genes stay. [Tom: only temporarily in most cases]
- stuttering families most interesting: focus on Pakistani families. [Tom: there is also a Cameroon families but the studies are less reliable also because the family trees are less "stable" i.e. too many affairs... ;-)]
- on 44 families: identified region on Chromosome 12 which contains about 90 genes.
- major article in science journal under review and news embargo. [Tom: could be the identification of the one of the 90 genes. As always, I completely disagree with the big journals policy, they are destroying real debate and make scientists look like schizophrenics]
- mutation in that gene is related to stuttering in that family, in other families, and unrelated Pakistani individuals.
- gene codes for protein that is part of a metabolic pathway. [Tom: If I had to bet, I would say it's dopamine pathway. Would fit with the Chinese article and suspicions from various sources that the basal ganglia is dysfunctional in at least some stutterers.]
- two other genes were localized, where the mutations are related to stuttering.
- the three genes account for less than ten percent of all familial stuttering.
- work is in progress on another Pakistani family on Chromosome 15 but is more difficult to do. [Tom: maybe it is more than one gene, but not sure.]
Monday, July 27, 2009
Check out the India website
You should check out the new website of the Indian Stuttering Association: here. The website is very functional and informative, but probably needs a more human edge to appeal to a wider audience.
I wish them all the best. After all they seem to be strong supporters and avid readers of my blog! :-)
I wish them all the best. After all they seem to be strong supporters and avid readers of my blog! :-)
Friday, July 17, 2009
More useless and directionless research
And there is more useless and directionless research on stuttering wasting student's academic lives and most likely taxpayer's money:
Let's take the first one. Is anyone seriously thinking that Italian kids are different to any other kids in any other country apart from cultural differences? Should we now do research on Communication attitude on German, Vaticanese, Australian, Black, White, big nose, big smile kids? What is the point?
And then another paper from the Australian journal article manufacturing facility. The biggest warning sign is of course the preliminary investigation. If you read the pre somewhere, run, run fast.
What more is there to be looked at in communication? It is OBVIOUS to me that communication is distorted, and who cares exactly how? Surely it is person dependent. If you want to look at consequences, at least look at other useless but fun topics like: Mating behaviour of stutterers vs non-stutterers? Do stutterers stutter while having sex? Do stuttering students avoid going to the toilet even when in desperate need because they need to ask the teacher verbally to leave the classroom? Must we therefore educate the teachers?
If you can't think of a more creative way to doing research, DO NOT DO RESEARCH! Do something useful: talk to your kids, your wife, your boyfriend, go to the gym.
Communication attitude of Italian children who do and do not stutter.
Bernardini S, Vanryckeghem M, Brutten GJ, Cocco L, Zmarich C.
J Commun Disord. 2009 Mar-Apr;42(2):155-61. Epub 2008 Nov 12. PMID: 19095245
The effect of stuttering on communication: A preliminary investigation.
Spencer E, Packman A, Onslow M, Ferguson A.
Clin Linguist Phon. 2009 Jul;23(7):473-88. PMID: 19585309
Let's take the first one. Is anyone seriously thinking that Italian kids are different to any other kids in any other country apart from cultural differences? Should we now do research on Communication attitude on German, Vaticanese, Australian, Black, White, big nose, big smile kids? What is the point?
And then another paper from the Australian journal article manufacturing facility. The biggest warning sign is of course the preliminary investigation. If you read the pre somewhere, run, run fast.
What more is there to be looked at in communication? It is OBVIOUS to me that communication is distorted, and who cares exactly how? Surely it is person dependent. If you want to look at consequences, at least look at other useless but fun topics like: Mating behaviour of stutterers vs non-stutterers? Do stutterers stutter while having sex? Do stuttering students avoid going to the toilet even when in desperate need because they need to ask the teacher verbally to leave the classroom? Must we therefore educate the teachers?
If you can't think of a more creative way to doing research, DO NOT DO RESEARCH! Do something useful: talk to your kids, your wife, your boyfriend, go to the gym.
Tuesday, July 14, 2009
Crackpot Award for Sally Reed
A crackpot award goes to Sally Reed who has no clue about stuttering whatsoever and makes promises of curing stuttering. Here is what she writes with the great confidence of a crackpot.
My questions to her are simple:
1) Where is the evidence that stuttering starts because of a traumatic (what she calls unhappy) event?
2) Why do millions of others with traumatic events did not start stuttering?
3) Have you followed patients for a year to look whether they relapsed or not?
4) How many have you actually treated? Can we contact them?
5) According to your theory, how can genetics influence stuttering? How about brain abnormalities?
(Thanks to a reader who I feel prefers to remain anonymous.)
Stuttering, in our experience, can be helped with hypnotherapy. Stuttering often occurs as a result of an unhappy event in childhood in which a child cannot express themselves.
Hypnosis can help find and then re-live events that led to the stutter and re-process them in a way that allows you to speak normally and fluidly.
Through re-living these past events from a safe comfortable perspective we can add our adult understanding and resources to what was likely a frightening or frustrating experience for a youngster.
Experience the freedom of speaking fluidly and freely in your daily life. Feel free to call or email about your situation, We'd be happy to talk to you.
My questions to her are simple:
1) Where is the evidence that stuttering starts because of a traumatic (what she calls unhappy) event?
2) Why do millions of others with traumatic events did not start stuttering?
3) Have you followed patients for a year to look whether they relapsed or not?
4) How many have you actually treated? Can we contact them?
5) According to your theory, how can genetics influence stuttering? How about brain abnormalities?
(Thanks to a reader who I feel prefers to remain anonymous.)
Sunday, July 12, 2009
More on genes from China
I reported on this genetics article from China, now published in a Western journal: J Hum Genet. 2009 Jul 10 which should increase our confidence in its quality. The research suggests a link between genes active in the dopamine (a brain chemical) system and stuttering. Dopamine acts on the connections between neurons in two ways via the level of dopamine and via the level of dopamine receptors that modulate the dopamine level. Jerry Maguire suggests to me that the result
Here is the abstract:
helps to support their dopamine hypothesis of stuttering that an over activity at D2 receptors contributes to stuttering. Many of our successful medications specifically target the D2 receptor i.e. risperidone, olanzapine, aripiprazole and others.I also emailed Dennis Drayna but he didn't reply.
Here is the abstract:
Association between dopaminergic genes (SLC6A3 and DRD2) and stuttering among Han Chinese.
Lan J, Song M, Pan C, Zhuang G, Wang Y, Ma W, Chu Q, Lai Q, Xu F, Li Y, Liu L, Wang W.
Department of Genetics, College of Life Sciences, Graduate University of Chinese Academy of Sciences, Beijing, PR China.
Normal function of the dopaminergic system is necessary for speech fluency. There was evidence that the activities of dopamine transporter (DAT) and dopamine D2 receptor (DRD2) could be altered in people with speech disfluency. This study aims to ascertain the possible correlation between two dopaminergic genes (SLC6A3 and DRD2) and disorder of speech fluency, and to determine the allelic frequencies of the five single-nucleotide polymorphisms (SNPs) (rs2617604, rs28364997, rs28364998 in SLC6A3 and rs6275, rs6277 in DRD2) among Han Chinese patients with this disorder. A sample of 112 patients with speech disfluency and 112 gender-matched controls were included in this case-control study. The results show that the presence of C allele at rs6277 in DRD2 gene is associated with increased susceptibility to the disorder, whereas T allele is protective. Haplotype 939T/957T is also a protective factor. Journal of Human Genetics advance online publication, 10 July 2009; doi:10.1038/jhg.2009.60.
Wednesday, July 01, 2009
The faces of stuttering
Kabhi na kabhi hum sab haklate hain! (Hindi: we all stammer some time or the other!)
(Make a statement. Send me your picture at tom dot weidig at gmail dot com! A picture and sentence on how you relate to stuttering!)
Quantum disabled
A reader is having a titanic battle with the BSA (British Stammering Association) heavyweights on whether the BSA should press for stuttering to be recognized as a disability. Here is some food for thought.
First of all, we must avoid the false dichotomy fallacy: either you are this or you are that. Disabilities come in different forms and shapes, and must importantly they continuously vary from no-one to complete. You can be 100% deaf or you can be 5% deaf. You might hear well but only a certain frequency range. You might be able to hear but not analyse sounds. So you might say that deafness is a disability IN GENERAL, and to various degrees for different people. The same with stuttering. If you just stutter slightly, your disability is minimal at best, maybe more of a handicap, a nuisance, or just a part of your speech pattern. But for a severe stutterer struggling to get out words for seconds, it must certainly be a disability for he or she cannot communicate properly and they need assistance by society if requested.
Now, we could have the case where someone stutters slightly but this slight stutter has a significant impact on life quality. Here it is not clear to me that he is disabled. He is just marginally disabled and his psychological set-up will make him as if he is significantly disabled. So the physical difficulty to produce fluent speech is critical for the extent of disability, in my opinion. This must be true because take the example of a scar in your face. For some people a big big issue, but that person is not disabled as such, but has a psychological set-up that blows the issue up.
This distinction leads me to the fluctuation in stuttering. We always look and often behave normally. Sometimes we are fluent, sometimes more fluent, and sometimes we are not. Or some very mild stutterers sometimes have severe blocks. So it feels a bit like we have a quantum leg. A disabled person might lack a leg, but we lack a leg sometimes and sometimes not! So when we have physical difficulty to speak we are disabled when we have none we are not.
Another issue is to distinguish between what I believe and how others see me. The girl at the bakery must consider me disabled as I always struggle to talk to her. People who have just heard me on a fluent day might consider me not disabled. And people who know me might consider me not disabled as such but probably with a clear handicap and are happy not to have such a handicap. Even if you think you are not disabled, others might consider you disabled and treat you accordingly!
Another aspect is the impact of the label. Yes some people or children who stutter might feel worse of when they are considered as disabled. And having the attitude of being disabled can prevent you from seeking out the best opportunities. But the doctor has to weight someone, she cannot write down a feel-good weight but the real one.
So how do I consider myself? I clearly feel disabled at times when I cannot say what I want to say and when people treat me differently. But at times I just don't feel this when I am pretty fluent or when I might stumble but I can say what I want to say. So I am quantum disabled.
(Please note that the use of quantum is a joke. I do not want anyone to take it up! :-)
First of all, we must avoid the false dichotomy fallacy: either you are this or you are that. Disabilities come in different forms and shapes, and must importantly they continuously vary from no-one to complete. You can be 100% deaf or you can be 5% deaf. You might hear well but only a certain frequency range. You might be able to hear but not analyse sounds. So you might say that deafness is a disability IN GENERAL, and to various degrees for different people. The same with stuttering. If you just stutter slightly, your disability is minimal at best, maybe more of a handicap, a nuisance, or just a part of your speech pattern. But for a severe stutterer struggling to get out words for seconds, it must certainly be a disability for he or she cannot communicate properly and they need assistance by society if requested.
Now, we could have the case where someone stutters slightly but this slight stutter has a significant impact on life quality. Here it is not clear to me that he is disabled. He is just marginally disabled and his psychological set-up will make him as if he is significantly disabled. So the physical difficulty to produce fluent speech is critical for the extent of disability, in my opinion. This must be true because take the example of a scar in your face. For some people a big big issue, but that person is not disabled as such, but has a psychological set-up that blows the issue up.
This distinction leads me to the fluctuation in stuttering. We always look and often behave normally. Sometimes we are fluent, sometimes more fluent, and sometimes we are not. Or some very mild stutterers sometimes have severe blocks. So it feels a bit like we have a quantum leg. A disabled person might lack a leg, but we lack a leg sometimes and sometimes not! So when we have physical difficulty to speak we are disabled when we have none we are not.
Another issue is to distinguish between what I believe and how others see me. The girl at the bakery must consider me disabled as I always struggle to talk to her. People who have just heard me on a fluent day might consider me not disabled. And people who know me might consider me not disabled as such but probably with a clear handicap and are happy not to have such a handicap. Even if you think you are not disabled, others might consider you disabled and treat you accordingly!
Another aspect is the impact of the label. Yes some people or children who stutter might feel worse of when they are considered as disabled. And having the attitude of being disabled can prevent you from seeking out the best opportunities. But the doctor has to weight someone, she cannot write down a feel-good weight but the real one.
So how do I consider myself? I clearly feel disabled at times when I cannot say what I want to say and when people treat me differently. But at times I just don't feel this when I am pretty fluent or when I might stumble but I can say what I want to say. So I am quantum disabled.
(Please note that the use of quantum is a joke. I do not want anyone to take it up! :-)
Monday, June 29, 2009
Swimming crawl and stuttering
Are you a good front crawl swimmer? My crawl was so lousy when I was at school. My major difficulty was breathing, especially alternating breathing from one side to the other. I constantly choked, and my movements were terrible. Even if I tried to concentrate hard on not choking and relaxing, I would still have this instinctive reaction, which made me gasp for air and in turn would completely get me out of control. But on the other hand, my breast and back stroke and diving longer distances were fine.
Only slowly did I learn to control my breathing. It took me months, but now I do not have this chocking instinctive reaction. And I even joined the swimming club, and train twice a week. My crawl technique is still far from perfect, but my breathing is perfectly fine now. No more gasps, no more struggle. And most importantly, I am more in control to focus on my techniques.
There is absolutely nothing wrong with my brain with respect to breathing while swimming crawl, but I learned to associate breathing in crawl with the sensation of running out of air and drowning. The more I tried to control my breathing, the worse it got. I got rid of this association by de-conditioning my body. It had to learn: No, you are not going to drown if you have no air for 2-3 seconds. The process took so long because I did not do it systematically, it was deeply ingrained, and I had to focus on swimming.
So why I am telling you this? Stuttering might well be similar with one big difference: there is something wrong with my brain. The moment the brain realizes a block in speech flow, it kicks off instinctive reactions as it has learnt to associate those moments with panic, fear, embarrassment, and so on. And we loose control. Unlike with swimming, those moments are not only learned by association, but can also be due to a low-capacity speech system which delays speech initiation. As I wrote before, we stutter because our brain or we expect to stutter or because the speech system can momentarily not cope due to a higher demand to capacity.
That's why unlike with swimming, we cannot easily unlearn because our brain is constantly creating mini-blocks. Think of the recovering alcoholic been given a glass of beer each week or the overweight person having to eat chocolate every week in order to test their resistance. Or, just imagine I had to unlearn the association breathing-in-crawl to choking if something from time to time creates chocking randomly in me.
Sunday, June 28, 2009
The faces of stuttering
Thursday, June 25, 2009
The faces of stuttering
I am a person who stutters, and also a high school career counselor, blogger at Make Room for Stuttering, writer, newsletter publisher, and President of my Toastmaster's club.
(Make a statement. Send me your picture at tom dot weidig at gmail dot com! A picture and sentence on how you relate to stuttering!)
The Millions of Real Heroes
I have had to deal with stuttering for thirty years, but tried to achieve as much as possible despite, and spent a lot of time blogging on stuttering and research.
YOU ARE THE REAL HERO. You have lived with the daily challenges of stuttering but do not resign and live your life. You are a parent of a child who stutters, and do your best to help. You are a therapist who has specialised in stuttering and spend your time and efforts to help people who stutter with passion and beyond your professional call of duty. You are a researcher who cares about understanding stuttering better.
Please send me your picture with a short sentence describing yourself and your relationship to stuttering!! And I will post them. To tom dot weidig at gmail dot com. And you will be one of the millions of real heroes featured of my blog! Send me a smiling picture! I am starting this new blogging idea based on my last post!
Wednesday, June 24, 2009
Who are the real heros to be honored?
Recently the American Institute of Stuttering (AIS) has honored the actress Emily Blunt, and last year they honored vice-president Joe Biden. Both have stuttered as teenagers, but are now completely fluent. So why should they be honored?
As a role model? Hardly, the simple fact is that Emily and Biden have no clue whatsoever what made them not stutter any more, it just happened to them. As it just did not happen to me and millions of others. But in itself not something that needs to be honored more than the millions of people who live with stuttering in their daily lives. The travesty is reflected in Biden's statement that "In my darkest days I would not trade my stuttering for what it's taught me and what it's made me. It's been the single most beneficial thing that's ever happened to me... having overcome it." Yes, but I can say the same thing about any tragedy that happened to me where I came out of unscathed. Take a air plane crash. If you can out of it alive, it does enrich your life and give you a new perspective. But of course, if you are among the dead or handicapped for life, how would you feel about such a statement? They have done nothing nothing at all to deserve their fluency more than all the millions who kept on stuttering. How many of us have tried to become fluent? Some of us, the real heros for me, have managed to keep it under control after very very hard work. But what have they done? They are the freak accidents of nature which made them fluent. God knows why.
As a role model? Hardly, the simple fact is that Emily and Biden have no clue whatsoever what made them not stutter any more, it just happened to them. As it just did not happen to me and millions of others. But in itself not something that needs to be honored more than the millions of people who live with stuttering in their daily lives. The travesty is reflected in Biden's statement that "In my darkest days I would not trade my stuttering for what it's taught me and what it's made me. It's been the single most beneficial thing that's ever happened to me... having overcome it." Yes, but I can say the same thing about any tragedy that happened to me where I came out of unscathed. Take a air plane crash. If you can out of it alive, it does enrich your life and give you a new perspective. But of course, if you are among the dead or handicapped for life, how would you feel about such a statement? They have done nothing nothing at all to deserve their fluency more than all the millions who kept on stuttering. How many of us have tried to become fluent? Some of us, the real heros for me, have managed to keep it under control after very very hard work. But what have they done? They are the freak accidents of nature which made them fluent. God knows why.
They are not role models for stutterers. Emily is fluent. If you want role models for young women who stutter, go to StutterTalk, and listen to Elana Yudman and Kristel Kubert and Caryn Herring and Samantha Gennuso. Of course, if you want a role model for acting skills, model looks, fashion icon, cuteness, down-to-earth, supporter of good causes, then take Emily. (Of course I am not saying that all the 4 girls from Stutter Talk could not rival her :-)
It is commendable that they do not forget the experience and pain of stuttering and that they take time away to support the cause. And I grant Emily a bigger credit here as Biden for she hardly has any other incentives. But should we honor them for such minimal effort? Invite them as key speakers. Fine. Thank them for supporting the cause. Fine. But do not honor them as you dishonor the others. Many spend a lot of time and resources on stuttering.You should honor StutterTalk's Peter and Eric, Greg Snyder, myself or others. Have we ever received an award yet, no! Or give an award to Per Alm who changed his career to work on stuttering and does diligent work to debunk research.
So why are they honored? For two very simple reasons: publicity and money. If Emily or Biden is on the picture, AIS is getting more exposure in the media and more attention from others. More people hear about them and ultimately someone might donate. Would I as AIS director do the same? Yes but still it is a corrupt system, which does not attribute honour to those who contribute most.
It is commendable that they do not forget the experience and pain of stuttering and that they take time away to support the cause. And I grant Emily a bigger credit here as Biden for she hardly has any other incentives. But should we honor them for such minimal effort? Invite them as key speakers. Fine. Thank them for supporting the cause. Fine. But do not honor them as you dishonor the others. Many spend a lot of time and resources on stuttering.You should honor StutterTalk's Peter and Eric, Greg Snyder, myself or others. Have we ever received an award yet, no! Or give an award to Per Alm who changed his career to work on stuttering and does diligent work to debunk research.
So why are they honored? For two very simple reasons: publicity and money. If Emily or Biden is on the picture, AIS is getting more exposure in the media and more attention from others. More people hear about them and ultimately someone might donate. Would I as AIS director do the same? Yes but still it is a corrupt system, which does not attribute honour to those who contribute most.
Tuesday, June 23, 2009
American Institute of Sloppiness?
You can read on the American Institute for Stuttering website on early intervention
Re onset, the longer from onset of stuttering, the most likely you keep on stuttering. It is obvious, because the proportion of kids who recover goes down to zero as a function of time from onset. So the longer the onset, the less kids who recover are in the sample, so those in the sample are more and more likely NOT to recover! Can you see where I get at? It is a mirage! Yes, there is a relationship, but there is a trivial explanation!
Re age, girls start speaking earlier than boys by an average of 6 months (my guess). Girls are much more likely to recover without clinical intervention. If I remember correctly, girls and boys are roughly as likely to start stutter (or may half as likely), but many more boys do not recover. So the sex ratio of 1:4.5 only happens after natural recovery and not at onset. So the earlier you pick up the child the more likely it is a girl and the more likely it will recover. Again the effect can be explained without any reference to treatment whatsoever.
Please read the passage again:
Can you feel the intellectual hollowness and sloppiness of the text? That's what we all need to fight to improve the level of debate!
Some of the most important and innovative work now being done in stuttering is early intervention treatment. It is cost effective, in both financial and emotional terms. It is almost unconscionable for a child to be denied it. Recent research now supports our common sense that tells us to intervene early. We now know that:The statement is typical for the sloppy and confident manner in which early intervention is glorified. Looks very professional and solid at a first glance, doesn't it? But dig a bit deeper, and every single sentence falls apart. It is symptomatic of the field of "evidence"-based intervention. Here is my dissection:
The sooner a child receives treatment, the shorter the treatment time will be and the greater the likelihood for lasting gains in fluency.
Early intervention treatment with the critical involvement of parents and caretakers can prevent a lifetime of potential shame and debilitation. The goal is to reverse the course of stuttering and resolve it before it becomes chronic and “hard-wired.”
Some of the most important and innovative work now being done in stuttering is early intervention treatment.Who did what? Too vague. Important and innovative sounds really great doesn't it?
It is cost effective, in both financial and emotional terms.In which way? Where is the calculation? Surely no treatment is cheaper? Especially because the 80% who recover are treated at financial and emotion costs? Statements are made without any supporting argument.
It is almost unconscionable for a child to be denied it.Wow. Can you feel the guilt? Pure propaganda. Puts pressures on parents. Anyone not agreeing is guilty of a crime against their child.
Recent research now supports our common sense that tells us to intervene early.Name the research! In fact, recent research has shown that Lidcombe is NOT as effective as thought, but no-one ever talks about the latest study. You cannot just make statements like this. How can anyone check your claims? Is the common sense not to wait because most would recover anyway?
We now know that: The sooner a child receives treatment, the shorter the treatment time will be and the greater the likelihood for lasting gains in fluency.Now my brain goes hyper. This statement is a classical example of correlation-causality fallacy. The statement itself is probably correct but the implied message is not. Let me give you a few pointers. First of all, do you mean "sooner to onset" or "sooner as in age".
Re onset, the longer from onset of stuttering, the most likely you keep on stuttering. It is obvious, because the proportion of kids who recover goes down to zero as a function of time from onset. So the longer the onset, the less kids who recover are in the sample, so those in the sample are more and more likely NOT to recover! Can you see where I get at? It is a mirage! Yes, there is a relationship, but there is a trivial explanation!
Re age, girls start speaking earlier than boys by an average of 6 months (my guess). Girls are much more likely to recover without clinical intervention. If I remember correctly, girls and boys are roughly as likely to start stutter (or may half as likely), but many more boys do not recover. So the sex ratio of 1:4.5 only happens after natural recovery and not at onset. So the earlier you pick up the child the more likely it is a girl and the more likely it will recover. Again the effect can be explained without any reference to treatment whatsoever.
Early intervention treatment with the critical involvement of parents and caretakers can prevent a lifetime of potential shame and debilitation.So here is the first sentence up to debilitation that I moderately agree on if the therapist is good. You can certainly work on attitude of all involved for those that keep on stuttering. But to be honest the "prevent a lifetime of" is too strong. Even though I know a lot about my stuttering: I still feel discomfort, embarrassment, shame and all other things occasionally but it is not running my life any more or holding me back big time.
The goal is to reverse the course of stuttering and resolve it before it becomes chronic and “hard-wired.They clearly did not read the latest brain imaging by Chang et al as explained in a post. Even recovered kids have this hard-wired in their brain. Their brains are different, but they managed somehow to deal with stuttering.
Please read the passage again:
Some of the most important and innovative work now being done in stuttering is early intervention treatment. It is cost effective, in both financial and emotional terms. It is almost unconscionable for a child to be denied it. Recent research now supports our common sense that tells us to intervene early. We now know that:The sooner a child receives treatment, the shorter the treatment time will be and the greater the likelihood for lasting gains in fluency.Early intervention treatment with the critical involvement of parents and caretakers can prevent a lifetime of potential shame and debilitation. The goal is to reverse the course of stuttering and resolve it before it becomes chronic and “hard-wired.”
Can you feel the intellectual hollowness and sloppiness of the text? That's what we all need to fight to improve the level of debate!
Sunday, June 21, 2009
A reader told me about his experience with using an in-ear metronome:
Hi Tom,.
I discovered that an "in-ear metronome" used by musicians improves my speech by about 50%. I bought the "mm-1 metronome" in a music store for 25 dollars! It is used like a bluetooth.
I put it in my ear, and I only have to do to speak at the rhythm of the metronome. Because the device has various settings: from fast paced to low paced. Thus you do not get used to it and is therefore more effective. But I found lower settings from 50 to 120 more effective. But it works fine with a setting of 70 or 65, too. Stuttering reduced to about 50% in one week and went down to 40% the next.
Before, I was not able to read without stuttering, and with the device I can read a whole page of a book, and stutter minimally like 2 times per page. &Past week I read for 15 minutes in front of my doctor and I didn't stutter once. (When I see a doctor, generally I turn nervous).
My interaction with people went from 25% (poor) to about 50%. Still I have ups and down, but the baseline is about 40%. I was able to order pizza, and leave phone messages. I am still not prepared to go to a drive, but with some practice, I think I will. I still stutter in front of authoritative figures with only 30%. I guess I need more practice and self-control
Saturday, June 20, 2009
No World Congress in China?
A reader sent me this email:
No link for Argentina world congress....I don't think.....still not official. I just heard from ISA people. Looks like it is going to be 2011. Was supposed to be 2010 in China, but didn't work out.
Friday, June 19, 2009
Lessons I have learned
Here is how I changed my mind on several issues over the years.
Tom2000: The brain is like a computer and there is a defect region for people who stutter.
Tom2009: The brain is like a big city and a deficiency might not be a deficit region but a disturbed communication between regions (like a bad transport system affecting the efficiency of a city).
Tom2000: A gene is responsible for stuttering in some people.
Tom2009: 10s of different gene (combinations) can cause stuttering.
Tom2000: A cure might be possible once we know what causes stuttering.
Tom2009: The fact of knowing in which way our brain is messed up will not lead to a cure. A messed up brain is a messed up brain.
Tom2000: Better brain imaging and genetics will show us the problem in a clear way.
Tom2009: Better brain imaging and genetics will over-load us with data due to sub-types and reveal the vast complexity of the human brain.
Tom2000: Early childhood intervention is helping kids.
Tom2009: Early childhood intervention is not working (measuring just fluency) for any treatment. The brain is messed up full stop, and you cannot change the brain. At best can you help the brain to adjust behaviours.
Tom2000: The brain is like a computer and there is a defect region for people who stutter.
Tom2009: The brain is like a big city and a deficiency might not be a deficit region but a disturbed communication between regions (like a bad transport system affecting the efficiency of a city).
Tom2000: A gene is responsible for stuttering in some people.
Tom2009: 10s of different gene (combinations) can cause stuttering.
Tom2000: A cure might be possible once we know what causes stuttering.
Tom2009: The fact of knowing in which way our brain is messed up will not lead to a cure. A messed up brain is a messed up brain.
Tom2000: Better brain imaging and genetics will show us the problem in a clear way.
Tom2009: Better brain imaging and genetics will over-load us with data due to sub-types and reveal the vast complexity of the human brain.
Tom2000: Early childhood intervention is helping kids.
Tom2009: Early childhood intervention is not working (measuring just fluency) for any treatment. The brain is messed up full stop, and you cannot change the brain. At best can you help the brain to adjust behaviours.
D&C debate: my grain of salt

I was listening to a discussion on the demands & capacity treatment approach with Joe Klein at StutterTalk: see here. I want to add my grain of salt into the wound:
1) They rightly point out that treatment needs to be better than natural recovery, but then Joe suggests that one research showed that 90% of kids recovered which is above the natural recovery rate. We need to be careful here. Some recent research has shown a natural recovery rate of 85%, but often people use 70-80%. So one really would need to have a control group to know for certain. It is important. Imagine the real rate is 85% but you have 70% in your mind. Then in each research you will claim success!
2) I rarely hear someone talking about relapse in kids. No experienced therapist would suggest that fluency in adults immediately after therapy is indicative of long-term success. You need to look at least one year down the line. Why do we never make the same argument for kids? We seem to assume that kids do not relapse, because their brain is plastic?
3) Obviously, reducing demands on a kid will make them more fluent. But isn't an easier spelling lesson also reducing dyslexia in dyslexic kids? Less difficult spelling challenges does not reduce the underlying severity of dyslexia, but gives us the allusion of improvements. If someone tells you that you have a beer belly, you can strengthen your muscles and have no belly, but you cannot keep this up forever! Without any doubt, such a low-demand environment is not forever, and at some point in their life they will be faced again with a normal-demand environment. The key question on stuttering is whether this lower demand period helps the brain to recover better and then better deal with a normal demand world! But at the very least a part of the success might well be an illusion of improvements.
4) Joe Klein said that Franken's pilot study research has shown that Lidcombe and D&C are equally good. Actually, the right statement to make is that both approaches had similar outcomes. The study design does not actually prove that the treatment approaches are actually reducing stuttering in the long-term above natural recovery but they are saying that no-one is better than the other. She is now doing it with larger number (they are at more than 120 right now), but I spoke to her and she agreed that it is not showing whether it is successful, because there is no control group.
The key question on demands and capacity as well as on Lidcombe is whether they help the natural recovery process, and make kids better equipped to handling their sensitive brain. My intuition tells me that they might well reduce symptoms in the short term and be lasting for a few but that they do not eliminate the sensitive brain per se, and a future event can make stuttering break out again. So I would rather see them as damage control exercises rather that treatment/cures.
Thursday, June 18, 2009
Can Martians stutter?
One of your fellow readers asked an intriguing question:
I would say that stuttering is about the disturbed communication between the different brain regions involved in generating speech (principally on the speech and motor control regions rather than language areas). Thus, I would argue that there will be Martians who stutter because some, like some humans, have a stuttering radio wave system (due to genes and developmental issues), BUT the question was on whether stutterers would stutter. There I argue that they will not stutter, because everyone will get a system that does not stutter in the same way that everyone has a mobile that is free of noise (because all noisy mobiles are replaced).
So to conclude, some Martians will stutter, but stuttering humans on the radio channel will not!
I read an old sci-fi book recently called "Last and First Men" written by Olaf Stapledon in 1931. In that book, there is a race of martians who communicate not by speech, but by electromagnetic fields. They live side-by-side with humans, and eventually a new race of human is born. These new humans are able to communicate with each other directly from brain to brain by radio communication ... a kind of radiotelepathy. My question: if, in 100 years time, scientists are able to develop a device that would allow radiotelepathy between people, do you think that stutterers would still stutter in this mode of communication?To be able to answer the question, I need to add more meat to it! Presumably the Martians do not have any speech (encode the motor sequences from information from the language areas) and motor control areas of the brain. They have a region that receives information from the language areas and encodes it into radio wave sequences which are sent to the motor regions that control the radio wave emitting "muscles". Effectively, the question asks whether it is a language or a speech motor control disorder. If the language region stutters, there is no difference.
I would say that stuttering is about the disturbed communication between the different brain regions involved in generating speech (principally on the speech and motor control regions rather than language areas). Thus, I would argue that there will be Martians who stutter because some, like some humans, have a stuttering radio wave system (due to genes and developmental issues), BUT the question was on whether stutterers would stutter. There I argue that they will not stutter, because everyone will get a system that does not stutter in the same way that everyone has a mobile that is free of noise (because all noisy mobiles are replaced).
So to conclude, some Martians will stutter, but stuttering humans on the radio channel will not!
Subscribe to:
Posts (Atom)










