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.)

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.

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.

A statistics that makes sense!

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

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.

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

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.

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.