Friday, July 31, 2009

Dave - Guest Blogger

Tom has asked me to be a guest blogger while I'm attending the 6th World Congress on Fluency Disorders in Rio De Janeiro in Brazil. This runs from the 5th to the 8th of August. I'll be giving a paper myself, co-authored with Suzana Jelčić Jakšić and Behlul Brestovci, on the relationship between Social Anxiety and Stuttering Severity. Of course, I want to find out what else is happening and I've already made a note of several presentations I want to attend. But first I have to get there - a flight from Heathrow at 6:20 am on Monday, change in Madrid and then straight to Rio, arriving at 17.35 local time. Glad I have a day to recover! More later! Dave

Guest Blogger: Dave Rowley

Dave Rowley has agreed to be guest blogger for the International Fluency Association Congress in Brazil which is held from August 5th to 8th. Dave is the organizer of the Oxford Dysfluency Conference, and a lecturer in psychology at de Montfort University in Leicester.

If you want to be guest blogger for an event or a topic, please send me an email.

We need your opinion

I got a request by Suzana Jelčić Jakšić. She prepares for her presentation at the International Fluency Association Congress in Brazil please let her know what you think are the three most important needs for people who stutter in your country. Email your answers to suzana.jelcic-jaksic at

Thursday, July 30, 2009

Amygdala, the cause of stuttering?

Time and Time again, I hear that the amygdala is causing stuttering. I am convinced the amygdala is not at the origin of stuttering and completely normal in stutterers rather a neurobiological instability of the systems involved in speech leads to stuttering and additionally provokes maladaptive learning by the amygdala that makes stuttering more severe and prone to relapse. So yes it is involves but it is normally functioning; we also do not say that the arm that holds the knife and stabs you in your back is dysfunctional!

On the other hand, stuttering therapies will benefit from understanding how to erase or over-write maladaptive associative learning by understanding how a normally functioning amygdala learns.

Do we stutter when we talk in our sleep?

Are we also stuttering when speaking in our sleep? Any feedback? Ask your partner and let me know! :-)

Wednesday, July 29, 2009

The Sally Reed saga

You might have noticed that my Crackpot Award to Sally Reed has let her to take off her wrong claims on the origin of stuttering and on the efficacy of hypnosis in curing stuttering. The link to stuttering from the main page is not present anymore, but the page still exists. However, she changed this page and now only suggests that one should call her. So will she then repeat what she took off? In any case, I am happy that she has removed the wrong claims, and I hope that she now realizes her mistake. If she has, I will congratulate her for being able to assess the evidence and to change her mind. If she publicly says so, I will remove the Award post.

On the other hand, what you do not know is what went on in the background. She went berserk and has sent a few angry emails to myself, a reader who sent her an email pointing out her award, and an academic who has sent her an email before my post regarding her website. She kept on saying that hypnosis is useful, which really no-one is disputing in some cases. In the emails, she threatened to sue us all, but focused on the academic because we two others are located in Europe and independent.  She then went silent. And then on top, she called the academics' department and university and complained! And the academic was forced to come in and explain to the heads and administration! That's all I know... no more news...

So her retreat from the website could be a tactical one to cover herself and launch a lawsuit against all and further the attack. Or maybe she has actually calmed down and realized that the scientific evidence is against her.

So what's the lesson? I live a dangerous life for speaking out and as an academics it's always best to shut up.

StutterTalk gets better

You need to watch StutterTalk's interview with Marjorie Rosenthal Foer. I have said many times before that StutterTalk is doing a great job by giving others the space to express themselves. But they are a bit like Larry King; letting their guest their opinion if they are wrong and not confronting people with counter opinions. (Of course, the guys themselves have great debates.) This time they were more forceful in having a real debate and asking good probing questions to Marjorie. Well done! Here is the link.

Tuesday, July 28, 2009

NSA conference 2009: Genetics

There was a research symposium at the NSA conference 2009. A Stuttering Brain reader sent me his notes and comments. If you have more, please send them to me. You can also order a DVD, but I wonder why they don't just put them on Youtube for everyone to see. Behnaz also blogs about the symposium here but I am absolutely not impressed by her summary which seems more like parroting the announcement and meaningless hyping and repetition "...invited five top researchers who represent the “who’s who in the world of stuttering." I hope her promised in-depth summary will be real journalistic work.

The most interesting and scientifically most rigorous talk was surely from Dennis Drayna, the leader of an NIH genetics team entirely dedicated to revealing the genetics of stuttering. Jerry Maguire, the chief investigator for the Pagoclone, was also there, but the trials are still running and an article for Phase IIa is still nowhere to be seen in a journal and other reports are fuzzy at best. Larry Molt had the audacity to talk about auditory devices (so I heard), but at the same time he has ignored emails from several different people asking him about the results of his studies but has time to attend conferences, obviously not having published the research study anywhere in a journal for the wider public after more than 5 years and providing actively or passively a cover to Speech Easy to hide the lack of evidence on Speech Easy; unacceptable and unprofessional behaviour in my mind and in the minds of others who as usual dare not to speak out for political reasons. I would like to know what he said in his talk.

I will just focus on genetics based on previous talks I saw and on a reader's notes:
  • 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.

Monday, July 27, 2009

Check out the India website

You should check out the new website of the Indian Stuttering Association: here. The website is very functional and informative, but probably needs a more human edge to appeal to a wider audience.

I wish them all the best. After all they seem to be strong supporters and avid readers of my blog! :-)

Friday, July 17, 2009

More useless and directionless research

And there is more useless and directionless research on stuttering wasting student's academic lives and most likely taxpayer's money:

Communication attitude of Italian children who do and do not stutter.
Bernardini S, Vanryckeghem M, Brutten GJ, Cocco L, Zmarich C.
J Commun Disord. 2009 Mar-Apr;42(2):155-61. Epub 2008 Nov 12. PMID: 19095245

The effect of stuttering on communication: A preliminary investigation.
Spencer E, Packman A, Onslow M, Ferguson A.
Clin Linguist Phon. 2009 Jul;23(7):473-88. PMID: 19585309

Let's take the first one. Is anyone seriously thinking that Italian kids are different to any other kids in any other country apart from cultural differences? Should we now do research on Communication attitude on German, Vaticanese, Australian, Black, White, big nose, big smile kids? What is the point?

And then another paper from the Australian journal article manufacturing facility. The biggest warning sign is of course the preliminary investigation. If you read the pre somewhere, run, run fast.

What more is there to be looked at in communication? It is OBVIOUS to me that communication is distorted, and who cares exactly how? Surely it is person dependent. If you want to look at consequences, at least look at other useless but fun topics like: Mating behaviour of stutterers vs non-stutterers? Do stutterers stutter while having sex? Do stuttering students avoid going to the toilet even when in desperate need because they need to ask the teacher verbally to leave the classroom? Must we therefore educate the teachers?

If you can't think of a more creative way to doing research, DO NOT DO RESEARCH! Do something useful: talk to your kids, your wife, your boyfriend, go to the gym.

Tuesday, July 14, 2009

Crackpot Award for Sally Reed

A crackpot award goes to Sally Reed who has no clue about stuttering whatsoever and makes promises of curing stuttering. Here is what she writes with the great confidence of a crackpot.

Stuttering, in our experience, can be helped with hypnotherapy. Stuttering often occurs as a result of an unhappy event in childhood in which a child cannot express themselves.

Hypnosis can help find and then re-live events that led to the stutter and re-process them in a way that allows you to speak normally and fluidly.

Through re-living these past events from a safe comfortable perspective we can add our adult understanding and resources to what was likely a frightening or frustrating experience for a youngster.

Experience the freedom of speaking fluidly and freely in your daily life. Feel free to call or email about your situation, We'd be happy to talk to you.

My questions to her are simple:

1) Where is the evidence that stuttering starts because of a traumatic (what she calls unhappy) event?

2) Why do millions of others with traumatic events did not start stuttering?

3) Have you followed patients for a year to look whether they relapsed or not?

4) How many have you actually treated? Can we contact them?

5) According to your theory, how can genetics influence stuttering? How about brain abnormalities?

(Thanks to a reader who I feel prefers to remain anonymous.)

Sunday, July 12, 2009

More on genes from China

I reported on this genetics article from China, now published in a Western journal: J Hum Genet. 2009 Jul 10 which should increase our confidence in its quality. The research suggests a link between genes active in the dopamine (a brain chemical) system and stuttering. Dopamine acts on the connections between neurons in two ways via the level of dopamine and via the level of dopamine receptors that modulate the dopamine level. Jerry Maguire suggests to me that the result
helps to support their dopamine hypothesis of stuttering that an over activity at D2 receptors contributes to stuttering. Many of our successful medications specifically target the D2 receptor i.e. risperidone, olanzapine, aripiprazole and others.
I also emailed Dennis Drayna but he didn't reply.

Here is the abstract:

Association between dopaminergic genes (SLC6A3 and DRD2) and stuttering among Han Chinese.

Lan J, Song M, Pan C, Zhuang G, Wang Y, Ma W, Chu Q, Lai Q, Xu F, Li Y, Liu L, Wang W.

Department of Genetics, College of Life Sciences, Graduate University of Chinese Academy of Sciences, Beijing, PR China.

Normal function of the dopaminergic system is necessary for speech fluency. There was evidence that the activities of dopamine transporter (DAT) and dopamine D2 receptor (DRD2) could be altered in people with speech disfluency. This study aims to ascertain the possible correlation between two dopaminergic genes (SLC6A3 and DRD2) and disorder of speech fluency, and to determine the allelic frequencies of the five single-nucleotide polymorphisms (SNPs) (rs2617604, rs28364997, rs28364998 in SLC6A3 and rs6275, rs6277 in DRD2) among Han Chinese patients with this disorder. A sample of 112 patients with speech disfluency and 112 gender-matched controls were included in this case-control study. The results show that the presence of C allele at rs6277 in DRD2 gene is associated with increased susceptibility to the disorder, whereas T allele is protective. Haplotype 939T/957T is also a protective factor. Journal of Human Genetics advance online publication, 10 July 2009; doi:10.1038/jhg.2009.60.

Wednesday, July 01, 2009

The faces of stuttering

Kabhi na kabhi hum sab haklate hain! (Hindi: we all stammer some time or the other!)

(Make a statement. Send me your picture at tom dot weidig at gmail dot com! A picture and sentence on how you relate to stuttering!)

Quantum disabled

A reader is having a titanic battle with the BSA (British Stammering Association) heavyweights on whether the BSA should press for stuttering to be recognized as a disability. Here is some food for thought.

First of all, we must avoid the false dichotomy fallacy: either you are this or you are that. Disabilities come in different forms and shapes, and must importantly they continuously vary from no-one to complete. You can be 100% deaf or you can be 5% deaf. You might hear well but only a certain frequency range. You might be able to hear but not analyse sounds. So you might say that deafness is a disability IN GENERAL, and to various degrees for different people. The same with stuttering. If you just stutter slightly, your disability is minimal at best, maybe more of a handicap, a nuisance, or just a part of your speech pattern. But for a severe stutterer struggling to get out words for seconds, it must certainly be a disability for he or she cannot communicate properly and they need assistance by society if requested.

Now, we could have the case where someone stutters slightly but this slight stutter has a significant impact on life quality. Here it is not clear to me that he is disabled. He is just marginally disabled and his psychological set-up will make him as if he is significantly disabled. So the physical difficulty to produce fluent speech is critical for the extent of disability, in my opinion. This must be true because take the example of a scar in your face. For some people a big big issue, but that person is not disabled as such, but has a psychological set-up that blows the issue up.

This distinction leads me to the fluctuation in stuttering. We always look and often behave normally. Sometimes we are fluent, sometimes more fluent, and sometimes we are not. Or some very mild stutterers sometimes have severe blocks. So it feels a bit like we have a quantum leg. A disabled person might lack a leg, but we lack a leg sometimes and sometimes not! So when we have physical difficulty to speak we are disabled when we have none we are not.

Another issue is to distinguish between what I believe and how others see me. The girl at the bakery must consider me disabled as I always struggle to talk to her. People who have just heard me on a fluent day might consider me not disabled. And people who know me might consider me not disabled as such but probably with a clear handicap and are happy not to have such a handicap. Even if you think you are not disabled, others might consider you disabled and treat you accordingly!

Another aspect is the impact of the label. Yes some people or children who stutter might feel worse of when they are considered as disabled. And having the attitude of being disabled can prevent you from seeking out the best opportunities. But the doctor has to weight someone, she cannot write down a feel-good weight but the real one.

So how do I consider myself? I clearly feel disabled at times when I cannot say what I want to say and when people treat me differently. But at times I just don't feel this when I am pretty fluent or when I might stumble but I can say what I want to say. So I am quantum disabled.

(Please note that the use of quantum is a joke. I do not want anyone to take it up! :-)