Jerry Maguire on DSM-V

Here is the presentation of Jerry Maguire at IFA 2009. I took the freedom to comment each slide. Jerry can of course comment if he wants.



TOM: I would not have mentioned the autoimmune component. It is Jerry's idea. Might be valid, might not be valid. But it is not an accepted fact, and should not be part of a discussion for DSM V.



Here is what wiki says about the classification structure:

The DSM-IV organizes each psychiatric diagnosis into five levels (axes) relating to different aspects of disorder or disability:
Axis I: clinical disorders, including major mental disorders, as well as developmental and learning disorders
Axis II: underlying pervasive or personality conditions, as well as mental retardation
Axis III: acute medical conditions and physical disorders
Axis IV: psychosocial and environmental factors contributing to the disorder
Axis V: Global Assessment of Functioning or Children’s Global Assessment Scale for children and teens under the age of 18

Common Axis I disorders include depression, anxiety disorders, bipolar disorder, ADHD, autism, phobias, and schizophrenia.

Common Axis II disorders include personality disorders: paranoid personality disorder, schizoid personality disorder, schizotypal personality disorder, borderline personality disorder, antisocial personality disorder, narcissistic personality disorder, histrionic personality disorder, avoidant personality disorder, dependent personality disorder, obsessive-compulsive personality disorder, and mental retardation.

Common Axis III disorders include brain injuries and other medical/physical disorders which may aggravate existing diseases or present symptoms similar to other disorders.

TOM: OK



TOM: The 9th criterion is reasonable, but the symptom as such is not easily observable. I would definitely not talk about feared speaking situations, because many fluent people have feared speaking situations. We need to talk about fear of stuttering in speaking situations, and fear of stuttering on certain speech utterances like words or syllables. Placing close to other speech / movement disorders is reasonable, too.



TOM: I completely agree with acquired stuttering being placed in Axis III. But I do not agree with psychogenic. Either it is neuro-biological or not. So for the extreme cases I would rather put it in Axis II with personality disorders. OR, maybe best label as a phobia? Actually, it might well be a phobia. A phobia to stutter even though the speech system is perfectly fine. And a technique like flooding should get rid of it.



TOM: I am not so sure about basal ganglia disorder. I have the impression basal ganglia is fine, but has to deal with bad neurology and so is in a sense dysfunctional due to input/output at best. But in the other disorders the basal ganglia has an issue.



TOM: I am highly supportive of the neurobiological basis of stuttering, but we cannot view the disorder of stuttering as only a disorder of neurobiology. As I say in my talk, we are biopsychosocial beings and stuttering is the prime example of how a neurobiological instability is blown out of proportion into a condition with strong psycho and social dynamics from a normal brain controlling a good part of the symptoms and associated handicap. So behaviouralists and other psychologists are relevant, especially if we cannot cure the bio part. At best we get smoothen out the bio with psychopharmacology.



TOM: Here I disagree with Jerry. It is not just social anxiety and avoidance. I am convinced that learned associations from classical and operand conditioning contribute towards the occurrence of dysfluencies and shape the content of all secondary symptoms. We should not forget them.



TOM: What would be the alternative to Axis I?



TOM: Money, money, money.



TOM: What is the difference between cognition and thought? I think we don't like the label psychiatric because we feel that our I is not impacted by stuttering. It is the periphery; the printer or screen is flickering but not the computer itself. Unlike depression, schizophrenia, bipolar.




TOM: We are very different to people with depression, bipolar, panic or schizophrenia. It is a fact that cannot be denied, and stating it clearly is just about pointing out the obvious. If the consequences are negative for others, it is not our problem what it is.We can also not state that Darwinian evolution is bogus just in order not to upset religious fanatics.



TOM: I do not mind being on Axis I as long as it is close to other periphery conditions like la Tourette. What about deafness or hearing difficulties? Is it in Axis I? Or not part of DSM?

Neurological vs Psychological? BSA London 2009 Workshop

Here is the presentation that I gave at the BSA conference. My goal is to show how a neurobiological basis for stuttering fits well into the diverse spectrum we see in symptoms of stuttering. There is no discrepancy between the psycho and neurobio!

BSA conference, London 2009

Here is a picture of Alan Falck (Voice Amp), Jan Anderson (SLT / BSA Scotland), Norbert Lieckfeldt (CEO BSA), myself, and Robin Lickley (university lecturer at Queen Margaret University in Edinburgh)

Please send me your picture from the conference!

Keith Boss on ISA

Here is the interview with Keith, former board member of ISA.

(Disclaimer: the opinions expressed here as Keith's and not mine or that of ISA.)

Thank you for having this interview with TheStutteringBrain. I want to talk to you about your experiences as an ISA director and about your opinions on the future course of ISA.

Let me first give you the opportunity to introduce you. How did you get you involved?

In 2006, I decided at the age 69 to turn my stammering life around. I told myself to avoid avoidance and I looked on the Internet to seek ways to help me to reduce my stammer and increase my fluency. I learned about the BSA and the ISA. I liked what I saw on the ISA web page, so I emailed them to ask them if I could help. Mark Irwin asked me if I could represent the BSA so I asked the BSA if I could represent them. And they told me that I needed to be a board trustee to represent them with the ISA. So I stood for election to the board of the BSA and was elected as a trustee. Meanwhile, the ISA had asked me if I would raise stammering awareness in India and Pakistan. My initial reaction was: I cannot do this, but then I remember I was going to avoid avoidance so I answered: Yes, I will help you. I became a special friend of the ISA and was included in the majority of the board emails. I stood for election in May 2007 at Cavtat, and I was elected as a director then.


Can you explain us a bit more about how ISA works? It is an umbrella association?

It is an umbrella association of national stuttering associations. And in my opinion, national stuttering associations are the parents of the ISA. The ISA is their brain child. Member associations have responsibilities. ISA has a board of 9 elected directors who have an equal vote, and an advisory board who have a lot of experience world-wide and who are in a position to advise the board of directors. The board of directors makes the policy and use whatever means they are able to carry the policy through. In addition to raising Stammering Awareness around the World, the ISA has an objective to help local people in countries where there is no national association to begin local self-help groups, which when expanded sufficiently to more cities, will form a new national association. The ISA would welcome that new association.


Can I ask about how the election for the board is working?

It is worth mentioning that the members of the ISA are member associations, and there is an annual general meeting of member associations at the three-yearly congress. At Cavtat, in 2007, the member associations present at the annual general meeting elected the new board of directors. A director can stay in office for 9 years, then must step down for 3 years.


And at Cavtat, Benny was elected chairman?

That's right. The board of directors elect the chair and vice-chair, and appoint a secretary and treasurer.


So why did the board elect Benny? Were there other candidates?

Myself and John Steggles (from Australia who subsequently became vice-chair) offered our names as candidates. After there were three names given, the board meeting was suspended for a few hours. The past chair Mark Irwin had a word with me, to tell me that I was unknown to the board and advisory board and he would not want this election to be divided. He asked me to withdraw my name which I did. Benny was a strong recommendation by Mark, and was elected as chair.


Which kind of background did they have? And what kind of background do you think an ISA chair should have?

I only knew Benny through the emails I had received since I was a special friend of ISA. I knew that Benny had been webmaster, but I had no knowledge of his capabilities other than being the person Mark Irwin recommended as chair. And how about John? Again, I did not know much about John, but then I learned he had a lot of experiences in management of his Australian association and leadership.


I heard that he resigned. Is that true?

He resigned as chair of the Australian association, so logically he could not longer represent the Australian association. And the new chair of the Australian association said he did not want John to represent the association anymore. This was discussed around the board and the advisory board some time early last year. It was concluded that the spirit of the constitution implied that John should stay until the new board elections. This year in 2009 Benny and Thomas Krall, the coordinator, decided that John could not remain as a board member and took him off all the emails.


So was this a unilateral decision or a vote by the board?

This happened after I resigned, but I know some Directors and Advisory Board members argued against this action.


Tell me about why you decided to resign your directorship?

I resigned in March, because I had felt for the last 15 months that the directions of the board was in no way helping people who stutter in countries where there was no national association. I was chair of Outreach, and Outreach is specifically leading the help in other countries, I felt I could spend more time helping other countries outside the ISA than spending my time on a lot of administrative non productive type emails. So I resigned to enable me to do more productive work.


Why did you feel that ISA was not effective in reaching out?

The management team of ISA, the chair and vice-chair, needs management skills, leadership skills and motivational skills. They need to draw ideas from the board of directors and advisory board and melt them into plan that the can take forward. The existing Management team of Benny and Thomas was not effective in these areas.


What is your reaction to the recent resignation of Benny as a chair?

Benny's resignation as chair was the best thing he could do for the future of the ISA. Unfortunately, he did not possess the kind of skills needed to chair of an international association, so I am especially thankful to him that he did the best he could for ISA in the current crisis, which started with the blog post by Dave Rowley and the interview by Suzanna. He deserves our thanks.


So the interview and the post really changed the dynamics?

It changed the dynamics completely, because some of the problems which had been bubbling since the end of 2007 became public knowledge, and were no longer private to the ISA board. By this information becoming public, there was a serious risk that member associations who are the lifeblood of the ISA might question their ISA membership, and some are actively doing this.


Let's look at the future! What do you think need to happen now to ensure a stable future for ISA?

There is no doubt in my mind that there is a desperate need throughout the world for an international stuttering association. There are so many countries where there is inadequate or no professional help available, and whilst I was a director we even began discussing how we arrange help even if limited in the shortest possible time. And we also looked to expand the previous ISP-S projects .

What is needed at the moment is a strong management team who can spend the remaining months of this board rebuilding a team spirit and starting and completing one or two small project which will help stutterers around the world. They have to return to closer links with their member associations. The current number of the board is seven, my own personal recommendation is to bring the number of directors back to nine, which can be done by appointing people to fill the two empty slots in line with the constitution. Then and only then elect a new management team.


Thank you for your time.

ISA chair Benny resigns

I am at City Airport in London enjoying the free WiFi! I am just coming from the British Stammering Association conference. The main news I have to report is that Benny has resigned as ISA chair, mainly due to the pressure created by the public discussion on the internal disputes on the ISA board and aired here on TheStutteringBrain. Some national associations have apparently raised the pressures, and he finally had to resign or face an empty association. It is a bit scary to see how influential an Internet blog can be effectively bypassing the national stuttering associations. Would we have known without TheStutteringBrain? No national association would have published Dave' interview with Suzanna, but I can. No, it would have dragged on and on and on. Of course, TheStutteringBrain has not caused the resignation, but has only made public the lingering mismanagement at the helm of ISA. At the conference, I have conducted an interview with ex-ISA director Keith Boss which will be published here shortly. I hope that the ISA board is resolving the issues working on ISA becoming stronger and more effective. I also hope that Benny keeps being actively involved: I don't question your commitment, but you were not the right person to lead ISA.

The conference was good. Lot of things happened. Mark Onslow gave a talk focusing on social anxiety, and reported new results from the Reilly study. And he mentioned me three time. Is be secretly reading my blog! ;-) I have given two workshops. They went well as far as I can tell. I also chatted with Paul and Vlad on lots of research stuff. More soon.

Structural Abnormalities: the result or consequence

When diffusion tensor imaging data (see the latest fiber tracking imaging data) came out to show that stutterers show abnormalities in speech related areas of the left brain, the case for stuttering having a neurobiological basis has strengthened. However, many have put forward the argument that these abnormalities are the result of stuttering (like the apparent finding of an increased spatial memory area of London taxi drivers). Many unfortunately did not come up with argument by good scientific thinking but as an intellectual knee-jerk reaction in defense of their ideology "it is is all psychological". Here is their argument: we stutter due to psychological issues, the brain shows abnormalities, they cannot be due to a neurological issue, so they must be the result of stuttering.

Nevertheless the argument itself deserves attention. Here is my opinion:

1. It is not yes or no situation. A stuttering adult might well have abnormalities due to a neurological issues and due to long-term stuttering.

2. The taxi driver example is not really comparable, because their functional data shows NOT abnormally! They still activate their brain in exactly the same way as normal drivers, but their activated area of spatial memory is just bigger! Stuttering is very different in that we also activate different regions.

3. Many stutters show a significant genetic influences. So how do those genes act to create stuttering? They must be doing something. It is most likely that they are mutations that cause trouble in the development of a stable speech system, therefore showing up as structural abnormalities.

4. Kids also show abnormalities making it less likely to be only a consequence of stuttering.

5. Even recovered kids in adulthood show differences. As they recovered soon after onset, their brain show not have been shaped too much. It is more likely that they had and still have a structural abnormality and that just compensated for it.

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.

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.

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!

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.

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.
This workshop should be useful to consumers and also therapists to better understand the traps and loopholes in evaluating evidence.

The text is self-explanatory... So all that remains is for me to write the talks!!! :-(

[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!]

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!

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.)

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.

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.

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.

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!

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.

A statistics that makes sense!

Finally, a statistic that makes 100% sense. (Picture by Chris Bodenner)

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.

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.

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!)

Dave - Reception

Suzana Jelčić Jakšić (keynote speaker here and organiser of the last World Congress for PWS in Croatia), Sarah James and Hilary Liddle, both from Leeds University and speakers at the Congress.



Delegates enjoying the music.

A group of delegates chatting. That looks to me like Pete Howell (UCL, London) with his back to the camera. Pete's giving several papers.



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

This could remind you of the "Last Supper", but it was only the beginning!




Monica Medeiros de Britto Pereira looking surprising relaxed!

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.

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.

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.

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.

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! :-)

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.

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.

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:

• 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.]
  

Here is my take. No surprises here but would be nice to finally hear the name of the first identified gene of stuttering! Genetics of stuttering is not about one gene, but about many different genes that are related to stuttering, like in other disorders. For example, deafness has 10s of such genes. The work is not easy and not many teams are working on this. We should not pin our hopes on a genetic cure, but rather on finding more and more mutations in genes, and hope that those genes' function is already understood from other experiments and disorders. Such insight can give us better clues on what can cause stuttering in this specific case of a genetic mutation and in the cases where a neurological incident has affected the same functions that the gene's proteins provide. Again, genetics seem to suggest that there are many different ways on how the speech system can break down and induce dysfluency. This has an impact on how stutterers are treated, and might explain why some can recover better than others. But such an approach requires very sophisticated expertise. And again, genetics provides the seed for stuttering but does not seem to condemn us to a life of stuttering but rather forces us to live with a sensitive speech system and to struggle with controlling our learning bad habits, associations to stuttering, psychological reactions, and social handicap.

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! :-)

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:

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.

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.

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.)

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

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.

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! :-)