Controversial honoring of Theo Schoenaker at the ISA-congress 2013

Robert van de Vorst wrote to TheStutteringBrain to make us aware of the controversial honoring of Theo Schoenaker who holds views that clash with science. Make up your own mind!

Controversial honoring of Theo Schoenaker at the ISA-congress 2013: Stuttering a neurosis?

By Robert van de Vorst

Recently, on the 10th of June in Lunteren, Theo Schoenaker has been honored for his pioneering work in the field of stuttering (see here). For those unknown with his work, Ton and Theo Schoenaker were the first to offer group-therapy for adult people who stutter in the sixties, under the name ‘Doetinchemse Methode’ (1966-2001). In 1974, Schoenaker emigrated to Germany where he became profoundly influenced by the Individual Psychology developed by Alfred Adler.

In short, based on a psycho-analytical approach, Schoenaker believes that (all) stuttering is a psycho-somatic disorder, a neurosis. He seems thereby to contradict evidence of stuttering as a neurobiological developmental disorder, including subtypes and genetic predispositions.

Visit me in Luxembourg

To all those that will attend the ISA Congress in Lunteren (The Netherlands), I will be there this Saturday and Sunday to attend a meeting of the consumer and self-help group of the International Fluency Association (IFA).

And as Luxembourg is less than 4 hours car drive from the venue, for any one coming from far take the opportunity to visit me in Luxembourg! My email is tom.weidig at gmail.com!

Switch to a new Reader of my blog feeds!

Keep in mind that Google Reader will be switched off from July 1st onwards. So if you haven't yet done so, use an alternative reader and transfer your links RSS feeds!

Enzyme related to Stuttering determined

I am in exam stress, but check out this article. Chemists have unravelled the internal structure of a protein linked to stuttering in 5% or so of the stuttering population.

This information is useful in understanding how the structure of this "abnormal" protein might cause neuro-anatomical difference in people's brains. But proteins complex 3D beasts that change their structure with temperature and pressure, so any clear cut statements might be difficult to reach unless in a few exceptions.

Post-doctoral position in neuroimaging of stuttering

To all scientists, check out Soo-Eun Chang's job opening for a postdoctoral position in neuroimaging of stuttering: see here. She is moving to the University of Michigan this summer to a position that was endowed for research in stuttering at a medical school, which is a very special opportunity!

Here is the job opening:

The University of Michigan Department Of Psychiatry is seeking candidates for a postdoctoral research fellow position in a brain imaging laboratory that studies the neural bases of stuttering and other related speech-language and developmental disorders.

And become a friend of her group's Facebook page, here.

Specialist course on stuttering

Check out the ECSF course if you want to do a specialist course in stuttering:

CALL FOR APPLICATIONS COURSE 2013-2014

The ECSF consortium would like to announce that the registration for the 2013-2014 course cycle is open. The ‘ECSF’ is a one-year program, providing both the knowledge and the clinical skills, to assist speech-language therapists in becoming European Fluency Specialists. The program is a well-designed combination of lectures, clinical practice and home assignments. If you are already working as an SLT, this specialization course is compatible with your current workload. Lectures are provided during two intensive weeks, scheduled during the academic year. These modules are combined with follow up sessions in the home country of the participant. The local sessions take place outside the intensive weeks. Preparatory reading and home assignments form an integral part of the course. The specialized clinical training, under supervision of a fluency specialist, can begin after the first intensive week. Application procedure and application forms can be downloaded here.

How the Internet saved people who stutter

I know that I have not been following up on my video posts. My apologies. I have been and will be quite busy and need to rethink my video-blog strategy. ;-)

Today I want to talk about the Internet and how it has revolutionized our lives in several ways.

Email was just the gift from heaven for me, because I did not have to call people or go to them and explain in spoken words. I could just write an email, fine-tune the email, and send it off. I felt like a normal person not impeded by my stuttering. Of course, that led to all kind of other problems, because now all the bad things that happened to me in response to an email could not be blamed to stuttering! Including unsuccessful talking to girls!

Blogging was another gift, as I could reach the whole community and again was not limited by my speaking. Again. That led to all kinds of other problems, as I decided to say whatever I had on my mind. Maybe as a reaction to all the things that I had on my mind but could not say in all those years. The barrage of to-be-told ideas broke.

The Internet in general provided me with the perfect source of information on stuttering. I could email people, they could email me, I could read all kinds of scientific articles, I could get into other people's mind by reading their first-person experiences, and I could influence the thinking of many people. And it opened up a level playing field to challenge those in positions of power in academic research or therapy that thought they were the God.

Facebook was not really a gift for me. I already had email and blogging to express myself. In fact, Facebook is democratisation of the Internet taking one step too far. Nowadays, everyone can just post anything on stuttering. Millions of logical fallacies which drive me insane. Even more so, because they are inextricably entangled with many interesting and diverse experiences of people who stutter. As I always say, your experience of stuttering is your experience and true on its own, but your interpretation of your stuttering, i.e. its causes and its treatments, is mostly likely marred with fallacies. Any reasonable message is drowned in the vast amount of messages. It's a bit like at stuttering conferences...

5 minutes on stuttering: Cultural Differences or not?

I am still not happy with the final product. It is much more difficult to speak unprepared without being able to go back and correct your English or fine-tune your message. I am also wondering if the 5 minutes should really be about how to deal with stuttering, and the more science part should be left to the written word.

And apologies to Einar again for mispronouncing his name... I am as bad as Peter Reitzes pronouncing mine! ;-)

5 minutes on stuttering: It's not the technique that matters but that they are delivered in a social environment made of fellow stutterers.

5 minutes on Stuttering: Toastmasters

The video cuts out at the end, because the connection was lost. I wanted to say that getting on stage is always a gamble: if I am fluent, it is a great performance. if I am not, I struggle through the words. Typically, the more I practised the better. One of my next video posts will be about tips for public speaking.

5 minutes on Stuttering: Is coastal breathing effective?

Patience. I am still not very good at speaking unprepared: I mess up my English at times, and swallow words. It's probably because I spend a lot of resources to come up with a message...

5 minutes each day on stuttering

Irresponsible marketing by Tony Robbins?

Check out this video (at 4:15), where Tony Robbins claims that he makes someone who stutters fluent after 20 years of stuttering! We have all experienced spontaneous fluency, that goes away very quickly. In my opinion, Tony engages in irresponsible marketing.

Tony is inspirational, in general, but he should stick to change the possible and not the impossible. Tony's mission is to change other people's lives, maybe we as a community should change Tony's life and increase his understanding of stuttering. Stuttering is not a learned behaviour; it is an adaptation of a brain that is prone to jamming due to neurobiological issues.

As he is coming to England with this video in 2013, the BSA might be able to report him to the I-cant-remember-the-name agency for irresponsible marketing. NOTE: Maybe we can find this guy called Waschad (spelling?) and get him to "say" a few words. I doubt he is still fluent.

Ousmane's theory on stuttering

Ousmane sent me his theory of stuttering. So I give him here the opportunity for others to get to know his theory. I am sure he would happy if you comment on it.

I did:

"I disagree with your theory. 1) you can still have neurological issues even when speaking fluent when alone. it could be that your system is too sensitive to stress and other demands because it is not optimally developed. 2) some people sometimes stutter when alone and sometimes not. 3) i believe there is a continuum in neurological issue: from severe to mild. 4) speaking on your own is NOT the same as speaking to others, which demands much more resources even if you have no stress."

Here is Ousmane's theory:


 DRAFT OF A THEORY ON STUTTERING

Preamble

  -It’s not the situation itself that generates stress but the perception we have of it. Also, before a stressful situation, there is an automatic interior answer that is not managed by our will. For fluent people, the answer is proportional to the level of stress. If the stress lasts for a certain period of time, that answer will be recorded and served by the

Reddit talks about stuttering

Joe sent me an email: "I'm a moderator at r/stutter on reddit. We're trying to expand our subreddit and turn it into one the go-to places for people to discuss stuttering. We have 218 members right now, but we know there are more out there. We are big fans of your blog and have you linked to our reddit page. If you could help us out we would greatly appreciate it."

Of course, I will do so, even though I kind of support that further traffic on commenting about stuttering goes from my blog to social media sites!

Here is the link: www.reddit.com/r/Stutter

Predictions for 2013

StutterTalk has published a discussion between Peter Reitzes and myself. Lots of interesting stuff. One of the interesting things is that, yet again, I say that I set myself the goals to speak slower with pauses, and yet again after a few sentences I speak too fast...

We talked about my predictions for 2012, and what materialized and what didn't. I also made a prediction for 2013, talked about my upcoming book, and more more.

Frank's gene mutation

Frank was so kind to write up his experience of having been diagnosed with a gene mutation that correlates to stuttering. I am not exactly sure whether it is the 3-gene system that everyone talks about. What is also interesting is that people with Ashkenzi ("Central/Eastern European") Jewish ancestry seems to be more likely to have this gene mutation. It is very likely that as genetic subtypes seems to exist, they are more prevalent in some ethnic groups.

Frank reports...

I became involved in the study via my participation in the NSA convention that took place in New Jersey (where I live) in 2008. I attended Dr. Drayna's workshop on the genetics of stuttering and during the course of the workshop he asked participants in the workshop who stutter and have family members who stutter to donate a blood sample for inclusion in his study. My father stutters so I volunteered to provide the blood sample. 

Several months later he called me to say that I had the genetic mutation they where studying; that this genetic mutation on chromosome 12 was related to the rare genetic disease of mucolipidosis. He said there was some indication of stuttering in some patients with mucolipidosis. He invited me to come to the NIH in Bethesda, Md. for several days for a complete study of my physical and sensory systems to determine if I had any other physiological changes associated with this disease.I was very interested in this study, after doing a little research about this disease on the web, as some forms of it are more common in members of the Ashkenazi Jewish community of which I am a member. 

I spent three days at NIH. Dr. Drayna mentioned that I had a double copy of the mutation but didn't get the disease as I lack a likely "starter gene" required to get the full blown disease. I received a complete physical while at NIH; they seemed to be especially interested in the skeletal system and took numerous x-rays. I recall receiving EKG and EEG testing and very likely other tests I don't recall. I should mention the staff was very pleasant and accommodating and both my wife and I stayed at the Safra Lodge at NIH that was very pleasant. 

At the conclusion of my stay at NIH I was I was told they didn't find physical abnormalities other than some spinal arthritis common in people my age (I'm 62); they also didn't correlation with severity of stuttering and the presence of this mutation. They were kind enough also to send a copy of the study results as they appeared in the New England Journal of Medicine in 2010. 

This study has had a significant effect on my attitude toward my own stuttering as I now believe my stuttering has a strong genetic component and I'm much more accepting of my disfluencies. 

Navigate through my 1000 posts using dynamic views

Blogger has introduced a new way to visually represent blog posts, which allows the reader to easily skim through all posts. This eliminates the big downside to blogging: the disappearance of old posts. Unfortunately, many good features about the old template are lost so I decided not to switch. But they found a compromise until a further upgrade to the new template. You can directly link to this new template called Dynamic Views and run a dual blog site. That's what I do: see the link below the blog title! An added bonus is that I now restrict the recent posts to be displayed to ten, which makes the blog load four times faster!

Enjoy the huge archive! I was amazed at how much I wrote... a valuable resource that is now accessible to the wider stuttering community. I might not be right each time, but surely the reader gets an idea into his mind to wrestle with!

I can even group them according to topics, but for that I need to give all my 1000 posts topic labels... any volunteer to help me out here? ;-)

Genetics Update or Why our community is at least 14'000 years old

Yes, even the Flint Stones might have had to listen to stutterers...

Check out StutterTalk's Peter's as-always excellent interview with Denis Drayna on the "latest Drayna wants to tell us about genetics as of December 2012". Some exciting news: biochemical experiments show that the gene mutation reduces activity of an enzyme by half, the earliest known mutation happened 14'000 years ago, roughly 10% are of the 3-gene subtype, and many more gene signals found.

All-in-all, congratulations to Dennis Drayna's team for their hard and constructive scientific work.

Here are the key nuggets of knowledge and insight that I picked up and commented:

1) They studied the effect of the mutation of the 3 genes of the identified cycle and they see a reduction of the activity of the corresponding enzymes ( a form of protein that accelerates chemical reactions to help the body to produce the stuff it needs to live) by 50%. This fits neatly to a reduced (but not zero) capacity of the brain to function normally in speech. Think of my motorway analogy: we have 2 lanes instead of 4.

2) As we know, more than one gene mutation in the three-gene cycle causes a severe disorder, but only one mutation correlates to stuttering. They also did the biochemical experiment for 2 or 3 mutated genes out of 3, and got a dramatic reduction of 90 respectively 100% of enzyme activity. This neatly explains why 2 and 3 mutation lead to a severe disorder and a single one does not as the body is just about able to handle it biologically.

Nan's excellent article on What Is Stuttering

Check out Nan's excellent article on What Is Stuttering.

I agree with everything she says on the science side. I mostly agree with what she says about treatment. Except, I would also have mentioned self-help groups and  the importance of effectively dealing with having a handicap, which does not need to involve searching for fluency. She does mention Lidcombe, but only for its ability to move kids who stutter earlier into recovery. That is probably true, but I still do not rule adaptation or measurement effects completely out. And she could have mentioned that other alternatives are no worse.

All-in-all, it shows that she is a regular reader of TheStuteringBrain for many years! ;-)