Click on the title in this index to go directly to the discussion below.
From: Ari (Israel)
Because i have long history of avoiding speaking, I have pattern of big blocks before i start speaking. That mean i feel my tongue tensing before i need to speak. It is very difficult for me holding the block, because i think that the listener don't understand what happen. What advice do you have?
From: Kevin Eldridge
Ari, Hello... You say that you have a history of avoiding speaking and it is difficult to hold a block because you worry about what the listener is thinking. I'm going to guess that when you speak you are trying not to stutter. This is different from trying to talk. I heard an analogy once that I will share with you. If a person is asked to walk across a board that is lying on the ground, most people will just walk across the board and have no difficulty. However, if that same board is placed 20 meters above the ground, that same person (who just walked across it with no difficulty) will now do something very different. They will try not to fall while crossing it. In order to do this, they use a very different gait than their normal gait. In fact, what they do is physically more difficult, and some people will fall. So, my first question for you is: Are there any situations where you can talk freely (with certain people, by yourself, with your pet)? My second question is: When you are with other people are you trying not to stutter, instead of just trying to talk?
From: Ari (Israel)
Thank you for your reply. Until 2 years ago i tried to talk fluently, and when i was afraid to stutter i didn't talk or switch words. Today i gradually try to talk despite the fear, and the habit to short the blocks that bring me to silent block or to fast repetitions. Today in a lot of cases it is not so hard to me, to wait and relax my speech when i feel the fear. but in the beginning of the sentence it this more difficult, I always think what will think the other side about several seconds of prolonging the first sound. And i know that with strangers it could happen and it happen a lot, with people that know me ,it is easier but they aren't my challenge.
From: Kevin Eldridge
Ari, Most people who don't stutter have difficulty understanding the fear (sometimes terror) that you are talking about. It is great that you are trying to talk despite the fear. One of the most difficult things with stuttering is that is an invisible disorder. By that I mean, that when you walk up to a stranger, you look normal, so they are not prepared when you begin to open your mouth and nothing comes out. I remember thinking that if I had one arm, when I was walking up to someone new, they would have a chance to prepare for me being different, but they are not prepared for me to stutter because I look like I am a normal guy. But then I realized that everyone has aspects of their personality that we can't see (and thus can't prepare for). I realized I had to stop worrying what they would think and keep talking. You've got a tough challenge, but it sounds as if you are heading in the right direction. Keep talking.... even if you stutter.
From: Ari (Israel)
You know sometimes i don't believe that really i can talk, and it astonish me when the words came out. Dr Joseph Sheean told that" It took me 10 years, but i was quite severe"( to overcome the fear). After two years i feel the difference, but i hope that the process will be faster. Thank you so much!
From: Cilek
It will get easier if you stay in the moment and experience the tension and then release it as you begin to talk. You are on the right track with the process of identifying the behaviors you want to change to initiate speech...it takes a GREAT deal of practice to establish the pattern, however. Keep exploring the pattern with practice outside of an actual communication exchange and then gradually try to transfer it is easier and then harder contexts. Good luck!
From: Genetics of Stuttering (stuttering genes found and mystery solved?)
I was wondering why in the famous New England Journal of Medicine article (2010) that received a lot national news publicity, stuttering genes were found on chromosome 12. But in a later journal in Human Genetics (2010), the locus of stuttering was found to be on chromosome 3. Here are the two references:http://www.ncbi.nlm.nih.gov/pubmed/20147709 N Engl J Med. 2010 Feb 25;362(8):677-85. Mutations in the lysosomal enzyme-targeting pathway and persistent stuttering. Kang C, Riazuddin S, Mundorff J, Krasnewich D, Friedman P, Mullikin JC, Drayna D. Hum Genet. 2010 Oct;128(4):461-3. Identification of an autosomal recessive stuttering locus on chromosome 3q13.2-3q13.33. on a related question: Do you think the power of advancing genetics technology can serve as a potential biomarker for stuttering?
From: Ken St. Louis
I don't know the answer to your question, but I suggest you look at the thread on genetics below wherein Dennis Drayna speculates about non-genetic causes. I will say, however, that the research that has been done has shown that DIFFERENT chromosomes have appeared to load for stuttering in different pedigree studies where a large number of family members stuttered. Samples, for example, in the USA, Cameroon, and Denmark have not been equivalent on the chromosomes and genes expressed in genetic studies. I take that to mean that stuttering can be caused by/related to different genetic influences. Also, if cluttering is added, then the picture becomes more complex, just as it does when other coexisting disorders are considered. I hope that begins to deal with your question.
From: Tom Weidig (thestutteringbrain.blogspot.com)
Stuttering like many other disorders involving complicated systems like hearing can occur due to mutations in different genes / gene combinations. These mutations cause or increase the probability of stuttering developing. This chromosome 12 finding is new as far as I know. Earlier in the year, they found mutations in genes on chromosome 3.... Genetics is making rapid progress in terms of speed and cost of analysis of, and precision of data mining on DNA. However, there is a very big unknown area from the DNA to the living brain. This process is very complex and unlikely ever be understood fully. For example, how genes form a living brain with speech abilities and how environmental influence modulate the expression of these genes.
From: Tim
just wondered how do you stop stuttering? ... kidding. erm i would call myself an average frustrated stutterer (AFS) by this i mean i am 25 and have successfully managed to keep a hold of my stuttering even after good attempts to let it go. Via the use of traditional and alternative approaches. If you look in forums they are full of people like myself all ranting about what hasn't worked, or worked for a while. What is the best path for the AFS? carry on with outdated techniques? move to a more cognitive approach? NLP etc? i know its prob a difficult one.. without a straght answer, but your the Profs get on it! :)
From: Gary Rentschler
Tim: There aren't any miracle cures. I may be misinterpreting your post, but it sounds like you continue to look for something new, after being disappointed with the last "new" technique or offering you discovered. Perhaps the "fix" that you are seeking just isn't there? Question #1: What is it exactly that you are looking for? ... be very specific. Question #2: It appears you've searched for a means to obtain the answer to #1, is it out there and you just haven't found it, or is it time to set a more realistic, obtainable goal? I can't answer these questions for you, but there are a lot of problems in life that don't have the most desirable resolution. Given that, what are you going to do about it? For me, the biggest advance that I made was to accept my stuttering; acknowledging (while kicking and screaming) that it was a part of who I am.. and feeling as alright as I could about it. After that I was able to move on. That may not be the answer for you.. or maybe it will be the answer that you come to too? Time will tell. Keep the faith!
From: Tim
hi Gary, your right my main issue is acceptance, even though i have done extensive work on desensitisation and advertising in the past (which has helped) i guess deep down somewhere i'm not fully accepting of some of my most tense moments of speech, even though i think i am at the time. I think it is because i can have a large degree of spontanous ease in communication, that when i do experience hard tension i am puzzled as to why. Especially if it is with people i am comfortable with. It is not that my goal stutter-free speech, but speech i can manage and that doesnt throw me off what i am saying. I'm interested you said 'For me, the biggest advance that I made was to accept my stuttering; acknowledging (while kicking and screaming) that it was a part of who I am.. and feeling as alright as I could about it. After that I was able to move on.' after the acceptance what was your next step, modification? and did you ever have to go back to looking at acceptance once you gained more ease in communication? Thanks again, and i really like your website too.
From: Kevin Eldridge
Tim, Acceptance is an interesting concept. For many years I was somewhat accepting of the fact that I stuttered. How could I not accept it... It happened every day. A change occurred however, when I was able to objectify stuttering as part of my physiological and psychological makeup and then accept whatever progress I was making at the time as just that "progress". Progress may have meant less stuttering on one day and less avoidance on another. Accepting these small steps as making a positive move along my own personal journey, and not focusing on the fact I was still stuttering, allowed me to see I was moving forward. This also allowed me to deal with the few steps backward that occurred. A journey is often 3 steps forward, one step back. Are you able to acknowledge the gains you are making and accept the little steps backwards as you travel on your own journey? BTW... thanks for posting your question. I'm enjoying the thread.
From: Tim
Hi kevin, i really liked this quote, i'm going to keep it.. 'A change occurred however, when I was able to objectify stuttering as part of my physiological and psychological makeup and then accept whatever progress I was making at the time as just that "progress". Progress may have meant less stuttering on one day and less avoidance on another. Accepting these small steps as making a positive move along my own personal journey, and not focusing on the fact I was still stuttering, allowed me to see I was moving forward. This also allowed me to deal with the few steps backward that occurred.' If i am honest with myself i saw acceptance of my hard stuttering as failure and thought that it was kinda like Edison accepting the dark and not trying to find the right filament that will create the light. I wrote a poem on acceptance a while back, to try and make sense of it.. How can you accept something, that causes you pain? Stammering can keep me up at night, w-w-wondering...is there something wrong with my brain? Day after day i struggle and grapple, searching, looking to find, that elusive golden apple. I'm in a conflict of acceptance of self versus perfection, A constant state of reflection, analysis and correction. When all i really want is relaxed self-expression. I know deep down it's mad to think the latest fad will fix me, but like a faulty wire on a light, somedays i cry out to be fixed. But... maybe acceptance and improvement, are not mutually exclusive, not a contradiction at all, but a bitter sweet paradox. Maybe the elusive golden apple, is not so elusive after all, but on inspection, and change of perception, A toffee apple takes form.
From: Vivian Sisskin
Hi Tim, Sometimes the words/language we use to describe our circumstances can be clues to ways to problem-solve. You say that you successfully manage to keep a hold of your stuttering. Your holding back and your success in suppression of your stuttering (even if it is just in your mind) might be the place to start. Perhaps consider more than reasoning with yourself in terms of 'letting go', and go out there and plan to show the very thing that you have been successful in suppressing. It won't be easy. Start in very low-feared situations, and plan that your success will be feeling some shame' it's inevitable. Let the desensitization begin! Vivian Sisskin
From: Tim
hi vivian, thanks for the rapid response. the desensitisation stage started a long time ago for me.. and continues. I have just come back from travelling where there was lots of first impressions, and i found myself much more reluctant to display my stuttering voluntarily, especially to people where English is not their first language. I felt as though i should talk as clearly as i could, in hindsight this was prob not good for my psyche as now i am back i feel like i have taken a few steps back in acceptance. In your experience what are good ways to desensitise in a work setting? thanks Tim
From: Vivian Sisskin
Tim, I think that a personal hierarchy of feared situations really helps in this case. Figure out where you could tolerate the shame and start with that. Most often, it is not initially in the work setting. If you force yourself to be open in a context where the shame makes you feel awful, desensitization may not happen, but instead, your desire to avoid becomes greater. I find that a factor in success is 'planning' to feel shame. Once you plan to feel something, your reaction to it is different. Some of my clients prefer to advertise their stuttering before they show it, as it gives them permission to stutter'. to sound different'to struggle. It sounds like you have some good problem-solving skills. I wish you some good successes! Vivian
From: Dick Mallard
Tim, your post should be motivation for all of us professionals to become as accountable as possible. Having stuttered for as many of my 68 years as I can remember and being a specialist in stuttering for all of my professional career, I have experienced enough on both sides of the clinical table to form some fairly strong opinions. It has been my good fortune to have had therapy following a Van Riper approach in which I learned to control my stuttering. In addition, I was trained in Precision Fluency Shaping and I have treated about 150 clients using various schedules of therapy. For the past 20 years or so I have been working with children and their families using procedures I learned from Lena Rustin and her staff at the Michael Palin Centre for Stammering Children in London. Given all this clinical experience, I am here to tell you that I became the most accountable to my clients when I approached their treatment from a problem solving approach. Just because a person stutters does not mean that is the problem they wish to solve or even need to solve. When I started listening to the people with the problem (children especially) and began developing problem solving strategies around their issues (instead of me telling them what they needed), then my "success rate" and overall personal satisfaction improved greatly. We don't know what causes this problem and we don't know how to cure it. But, we can take the time to ask questions, listen to what is being said, explore overall communication issues, and try to understand the communication environment in order to develop the most appropriate treatment approach. I believe that approaching stuttering as a problem that needs to be solved instead of a disorder that needs to be treated is the most accountable, efficient way to proceed. Thanks for your post. Good luck to you!
From: Tim
thanks Dick.. reading back my post i realise their being a hint of sarcasm, in the 'getting on with it' ha. A problem solving approach is what i'm about, and i want to be a social worker so i better develop one! I have always been under the impression the client is fully accountable, what is this im hearing the therapist has accountability too.. hmm seems like a new idea i'm yet to experience, but i like it, i like it alot. Cheers. ;)
From: Dick Mallard
I can assure you that you would like working from this perspective. It is efficient and effective! Perhaps we can talk more at a later time.
From: Keith Boss
This is an interesting thread. I would like to throw in some other thoughts as a person who is working to improve my communication every day. I think some (maybe a lot) of our difficulties continue because we have not understood how our brains work. There are countless dualities in life. (up/down; in/out good/bad as examples one means nothing without the other.) Our brains have a conscious / subconscious duality. This duality usually works in perfect harmony. The subconscious takes the pictures / ideas / etc. from our consciousness and does everything in its power to make what our consciousness wants to happen. (Bear with me, I am getting to the point, but this is a ginormous topic.) There is one major problem in this duality. The subconscious does not understand a negative. It only understands positive and it takes the positive thing you are focusing on to make it happen. So if in your consciousness you are focusing on not wanting to stutter or problems you had when you stuttered then your subconscious tries to make them happen, again and again and again. That is why I focus on improving my communication day by day. A forward thinking positive, achievable goal. When I stutter I think, very briefly, 'that is interesting, how can I communicate more easily next time'. Hope this is of use to this discussion. Keith
From: Sheree Reese
Hi Tim, I've been working with a support group (adults) and have seen first hand how valuable the group can be in helping their members to be more accepting of not just their stuttering, but who they are in general. Do you have access to a group?
From: sachin (TISA)
Yes, I too wish to bear witness to that fact: self help group helps you in many ways-One, you develop more acceptance for yourself and second- you get plenty of chances to practice many "social" skills.. TISA actively promotes them. In this conference, Two of TISA seniors share their story and the role SHG played in their life.
From: Diane Games
Hi Tim. wish that I knew the answer to your question!! or the answer for "curing stuttering." the truth is sometimes those who do the therapy can't always explain the successes or the reasons some clients are unhappy!!...but is do know one thing, treatment is a partnership and it is complex...DG
From: Cilek
Appreciate the question...after working with individuals who stutter for over 30 years, I agree with the key issue. Possible suggestion....accept the variability. Enjoy the fluency and control, don't get to frustrated by the down cycles. In summary, keep it as even as you can - not fun to ride the roller coaster.
From: Lil Peter (age 11)
I am a young stutterer and I was wondering if stuttering wears off at old age?
From: Gary J. Rentschler
That is a very interesting question and being of an older age I have some thoughts about that. Lots of things change as you get older; some of the changes are good and some aren't so happy. But of the ones that are happy, I've seen that I have changed and so has my stuttering. Now it hasn't gone away mind you, but I think that I've changed how I think about. For me, therapy was both very difficult and pretty successful. Looking back I'm glad that I worked hard, thinking that if my stuttering didn't go away that at least I'd know what to do. Well, my stuttering didn't go away, but I do know what to do when I think its going to happen. Now, after many, many years of practice, I've got it pretty much under control.. not perfect, but I can say what I want to say without needing to worry about stuttering very much. And because I've told SO many people that I stutter, one more person finding out really is not a big deal. Some people are surprised to find out that I stutter. In fact a new friend that I met in Cleveland at an National Stuttering Association meeting (who stutters) emailed me afterwords and asked me if I was a person who stuttered! I don't try to fool people into thinking that I don't stutter; in fact I've found that most people are actually quite understanding and nice when I tell them. Once in a while there's a person who isn't so nice about it, but I just figure that that's not a person I really want as my friend anyhow. I've got lots of friends now, many who stutter and many who don't. But I always feel a special bond with my friends who stutter. So I think the answer to your question is, yes! Lots of things change, even your stuttering. For most older people who stutter you just learn to live with it and it doesn't seem all that bad compared to so many other things that can happen to you. Regards and best of luck. Ol' Gary
From: Kevin Eldridge
Hey Peter! I just read what Gary wrote you and he gave you some good things to think about. It's really cool that you are taking the time to ask questions at this conference. I hope you find something interesting to read as well. When I was your age, there was nothing like this. In fact I don't think I talked to someone else who stuttered until I was 18 years old. So... keep learning about stuttering, keep talking (whether you stutter or not), and who knows...
From: Dick Mallard
Peter, you ask a great question and Gary wrote a great answer to you--even at his advanced age! I am 68 years old and have stuttered as long as I can remember. I had no therapy until I was 22. My stuttering is very much in control. As a matter of fact, helping people who stutter and teaching others about speech pathology has been my profession. So, if you have the right attitude and don't let the problem control you, stuttering can be a good thing. The answer to your question, I believe, is "yes." Talking does get easier with age in most people. Notice I said "talking" gets easier, not necessarily stuttering. You can be an effective communicator and still stutter. My experience was that when I quit trying not to stutter and learned how to stutter with ease and control then talking/communicating became easier and the problem did not bother me as much. I hope you experience the same success. Best wishes and again thanks for this great question.
From: Toni Cilek
"Wearing off" is a good way to think about how things change as we get older. It reminds me of painting on the sidewall and noticing that it fades away over time. Having worked for many years with children your age, it almost always does fade with time, especially if you spend some time in speech sessions working on it and talk to others about it. If you think about it in this way, you might also be more patient with your speech therapy too. Good luck!
From: Bernie W ( NSA Central North Regional Chapter Coordinator)
To the panel. I'm curious as to your experiences and outcomes in treating the older or "senior" adult people who stutter. As someone who has stuttered almost all my life, and experienced the gamut of stuttering therapy, from traditional therapy, to hypnosis, to summer long speech camps, is more stuttering therapy reasonble for me? I know most of the stuttering control techniques and can use them when I want to (not often ). I'm pretty comfortable with my stuttering and advertise it when I can. Somebody convince me that stuttering therapy is worth it for me.....or not. And thanks for taking the time to do this panel.
From: Gary J Rentschler
Hey Bernie: As one senior to another, I'd tell you that it depends what kind of therapy that you get... if you know the techniques and aren't hiding your stuttering, what's left? I always wonder about what 'drives' stuttering; what precipitates instances of stuttering? Not necessarily what causes it, but what brings it to the surface? My thoughts are for some people there may be an underlying motor component(the muscles, coordination, brain programming and the like) -- their speech motor system is in some way compromised and when conditions present themselves, it breaks down and stuttering results. For others, the old fears, anxieties, thoughts and beliefs about their stuttering impact the brain in a way that results in the person speaking in a way which overcompensates for their fears of stuttering. This often takes the form of speaking too quickly, using too much effort when they make sounds or starting to speak too abruptly --- again stuttering results. Here are some informal (and unscientific) ways to distinguish between the two -- if you don't stutter when you are talking when you are all alone, it would seem like your speech motor system is fairly sound and the difficulty is more anxiety based. Now here's one you'll like better -- tell your wife a speech pathologist told you to buy a six-pack. After consumption, if your speech is better, its likely that your stuttering is anxiety based -- the beer diminishes anxiety and inhibitions. If you stutter more, perhaps there is a motor component to your stuttering -- alcohol diminishes motor control and coordination. If there is no change, get another six pack and try again. EVERYONE PLEASE KNOW THIS IS "TONGUE-IN-CHECK" AND MEANT TO INJECT AN ELEMENT OF HUMOR! However, I have seen people who stutter experience either an increase or decrease in the frequency of their stuttering after a drink or two. I have a feeling you may already have tried this experiment! But my serious answer to your question is that perhaps another angle that you haven't pursued may be to work on how you habitually respond to the environment. I know for me, I respond in fear to having to introduce other people to one another. I've discovered that there is a "voice" inside of me that says that I have to introduce the two people to one another before they can introduce themselves. Yes, isn't that stupid! God forbid that the two people would introduce themselves without me! Its irrational, but that's what my brain tells me, and of course that results in me trying to rush to get it out before they have a chance. And as a fellow senior, you know that I usually need to buy time just to remember their names -- a dysfunctional plan. Let's talk more about this is you're interested. My warmest regards to all your comrades in Michigan, Bernie. Gary
From: Keith Boss
Introducing people is the bane of my life as well. My brain thinks that 'not introducing them' is avoidance. I have commuted to 'avoid avoidance' ergo I introduce. My brain knows they can do it themselves, better than I can, but------. You are right. I need to reprogram my brain to let them do it. LoL Keith
From: Lynne Shields
Hi Bernie. The first thought that pops into my mind is to ask why you'd want to be convinced. My take on treatment for the mature person (what my 16-year-old son refers to as 'old people'--this includes me, of course) is that if a person has some aspect of their stuttering that they find truly problematic, and they have motivation to address it and think that a professional might provide some insight, then a period of treatment is worth considering. On the other hand, if you are pretty satisfied with how you are managing at the moment, or can sort out how to make some modifications to what you are doing on your own, then I wouldn't think you'd have any reason to seek therapy. Most of the adults with whom I've had the pleasure of working, particularly those who have had some therapy in the past, tend to come to me with a pretty focused set of concerns. I'm not in the business of convincing adults that they need treatment; rather, I really enjoy problem solving with them, working together to figure out ways to manage the presenting issue in a way that fits the client and his or her needs. Some adults really only need a session or two to give them some ideas to run with. Others may want to work for a longer period of time. I'm of the opinion that it would be a waste of my time and yours for me to talk you into something in which you had no interest. If you're on the fence about it, then I'd be interested to hear what's on either side for you. Best regards, Lynne
From: Bernie
Lynne and Gary, thanks for replying to my post. There are still times where I think that maybe a couple sessions of speech therapy wouldn't be a bad idea. But, then I think, nah, been there done that. I probably would enjoy group therapy rather than individual sessions if I went back. I'm just wondering what the success rate, if you want to call it that, is with seniors when they do have stuttering therapy. Lynn, I like that you suggest that if I returned to speech therapy, I should have specific goals in mind. For me, just having specific goals is a challenge itself.
From: Lynne Shields
Bernie, I'd say that the success rate for adult clients is dependent on the goals the individual has in mind. When someone comes in with a specific goal, the success rate is much higher than someone who comes in wanting me to 'fix' their stuttering--an unrealistic goal, and suggesting that this person really isn't ready to dig into the work of therapy. To give you an example of someone coming in with a goal in mind, we had a man come in to our clinic who simply wanted to work on his phone answering skills. His work required quite a lot of this, and he was not confident about it simply because one of the words he was required to say on answering the phone contained one of his feared sounds. We facilitated the process of him setting his own steps to achieve his goal, and he met it within a few months' time. Could he have worked on other things? Of course. But, he came motivated to work on this one goal, achieved it, and left satisfied. Regarding the beer therapy, I'm with you on that one--I'm sure that, were I someone who stuttered, it would cure my stuttering only because I'd be asleep, not talking and, therefore, not stuttering! Regards, Lynne
From: David Shapiro
Hi Bernie, I think you're asking a good question, as the other respondents have shared. Honestly, I think interpretations of reasonableness, perhaps like beauty, often reside in the eye of the beholder. No one can tell you if more stuttering therapy is reasonable for you. That depends on what you would wish to achieve specifically and how treatment would enable you to reach that accomplishment. Identification of your own goals should be a part of any prospective treatment that you might consider, particularly given your experience with diverse treatments. I have worked with a number of senior adults who, like you, have had numerous treatments throughout their history. I am intrigued by their willingness to consider yet another form of treatment. It has not been uncommon for them to achieve their personal communication goals in part because they could attend to their own needs, perhaps for the first time. Previously they had conflicting obligations (e.g., career, marriage, children, finances, etc.). Maybe timing is essential. Maybe the appropriateness of the treatment for each individual is key. Maybe it is never too late. Call me an optimist, but I think options, paired with ability, come with age. I'll be thinking of you. Good luck. David
From: Ari (Israel)
Joseph Sheehan: "Age is not too important a factor, but emotional maturity is. One of our most successful recoveries on record is that of a 78 year old retired bandmaster who resolved that before he died he would conquer his handicap. He did."
From: Walt Manning
The nature of stuttering and the problem it represents for older speakers has not received a lot of attention in the literature. What evidence there is indicates that older speakers who have stuttered for years have about the same level of severity as younger speakers who are about to enter treatment. However, the stuttering often represents less of a handicap as people have achieved successes in life and learned to adjust to their problem. As a result, there are very few people over 50 who seek formal treatment. One reason may be that previous experiences with therapy were less than effective. If a person is interested in seeking treatment the key issue is finding an understanding and experienced clinician with whom you feel comfortable. As we have seen from some of the previous posts, individual (or group therapy) experiences can be very useful. Opportunities for reassessment and change occur later in life as people take the opportunity to do something about a problem that they have put into the background for much of their lives. As a result, people are apt to readjust old responses to lifelong problems. The support and direction provided by some brief therapy (or interaction with a support group such as the National Stuttering Association or Friends) may inform and refine self-directed change and improve the quality of life.
From: sachin (TISA)
I am trying to ask an intelligent question from professors - but not sure, so sincere apologies before hand! In about 50% cases of PDS, genetic connection is found. Is it true? For the rest, is it safe to assume that their stammering is the outcome of environmental factors (early negative speech experiences and learned response to that)? Thanks in advance!
From: Ken St. Louis
Dear Sachin, Good question. I'm not an expert on genetics, and maybe Dennis Drayna will weigh in here. Yairi and others have been suggesting that about half of those who stutter most likely have some documented genetic influence. About half do not. But that does not mean that the latter half have environmental causes. It is possible for people to have subtle physiological changes that are not genetic and not, strictly speaking, environmental. My best guess is that those stutterers for whom genetic links are absent most likely have some neuromotor differences that are determined by other factors. Some of those might be subtle brain damage at birth (as Per Alm suggests), neurochemical differences due to such factors as diet, or even changes in the brain due to environmental trauma. All this is not to say that parental expectations or very high speech standards or various types of psychopathology cannot cause stuttering, but these are probably quite rare. That's my take. Others may disagree. Ken
From: sachin (TISA)
Thanks Ken! I am doing a lot of 'talking about' stammering- and it really helps to understand some of the basic" questions.. Thanks from TISA too!
From: Tom Weidig (thestutteringbrain.blogspot.com)
Hi Ken, I agree with your answer. But your last sentence "All this is not to say that parental expectations or very high speech standards or various types of psychopathology cannot cause stuttering, but these are probably quite rare." is too vague for me. I would say that high parental expectation / high speech stds / psychopathology can (a) MODULATE stuttering in those with a neurobiological basis or (b) CAUSE stuttering-like psychosocial maladaptation from normal speech dysfluencies and mental hesitations. Any thoughts?
From: Ken St. Louis
Hello Tom, Hmmm. I completely agree with your first alternative, but I believe it would be another example of the sort I listed, i.e., cases of stuttering with neurophysiological origin but without currently available evidence of genetic influence. Your second alternative is interesting and hearkens to the so-called "monster study" at the University of Iowa where an attempt to create stuttering in orphans did not create stuttering but ALLEGEDLY created hesitancy and concern about speech. That certainly is possible. But I was not ruling out a purely environmental etiology, even if extremely rare. The longer I've been working in this field, and it's been a long time now, the more I have learned NEVER TO SAY "NEVER." I cannot confirm this since the person who told me is deceased, but--if true--a man once bet a well known leader in stuttering (also deceased) that the leader could not make him stutter. The leader reportedly took the bet and won! I don't know what was done.
From: Dennis Drayna
I think the preceding raises many good points. The best data we have on this question shows that about half of individuals who come to stuttering therapy have a clear family history of stuttering. The simplest interpretation of this (although not the only interpretation) is that half of stuttering is due to inherited causes. From the point of view of geneticists, estimates made this way are often too low, because family history can be unreliable, especially for recalling things that were a problem. But for the moment, I think the estimate of one half is a good guess. What is the cause of the other half? A few factors, such as perinatal hypoxia (a failure of a newborn to begin to breathe properly at birth) and trauma to the head show very modest association with stuttering. However it's clear that these explanations are imperfect, and could only explain a very small fraction of stuttering. It can be difficult to get good measurements of things like parental behavior toward stuttering in the home, so this remains an area for more research in the future. The current interest in genetic research in stuttering comes from the fact that such research can reveal things down to the level of cells and molecules, which can provide unprecedented details about the neurological aspects of stuttering.
From: Tom Weidig (thestutteringbrain.blogspot.com)
Hi Dennis, you write that "A few factors, such as perinatal hypoxia and trauma show very modest association with stuttering. However it's clear that these explanations are imperfect, and could only explain a very small fraction of stuttering." ----- Yes, but would you agree that this does not automatically imply that the rest (social) environmentally? ---- There could be many other developmental issues. I would actually be surprised if there were any major risk factors, because there are many different ways to insult the developing brain. The issue is of course that this is not really empirically verifiable due to the large number. I would also say that speech is one of the most demanding tasks a brain has to do and one of the most noticeable if it goes wrongly. So even small issues might have an observable effect.----You might be interested in my two blog posts on a Swiss paper by Ajdacic-Gross et al. http://thestutteringbrain.blogspot.com/2010/05/reply-from-author-of-stats-paper.html
From: Tom Weidig (thestutteringbrain.blogspot.com)
You write that "...difficult to get good measurements of things like parental behavior toward stuttering in the home, so this remains an area for more research in the future." ---- But you would agree that this factor is NOT relevant until after the onset of stuttering at the age 2-3? The social environment cannot react towards stuttering before onset. But then the parental behaviour toward stuttering can only modulate a neurobiological basis, right? Parental behaviour surely impact the development of the brain indirectly. But the vast majority despite terrible parental behaviour do not have stuttering onset. So there must be a neurobiological basis in any case? Be it genetics, or developmental (caused by random effects or parental care)?
From: Nan Bernstein Ratner
As someone who has spent a great deal of time and energy trying to investigate whether parental behaviors play a role in the onset or perpetuation of stuttering, I can say that we have NO data to suggests that parents play a role in either stuttering onset, or its recovery/persistence. Nan
From: Keith Boss
Nan, I am interested in the way this thread is going. My belief, not proven fact, is that parents can and do indirectly affect a child's stutter. Children while learning about the world around them ape their parents / people / siblings who interact with them. If the way of life in the home is fast and furious and parents speak quickly the child will try to copy this. The child may not perceive slight pauses for breath etc.and they have not programmed their brains properly with all the component parts of speech. Hesitancy starts; child loses 'turn to speak'; child gets frustrated and pressure is increased. Is this scenario of mine not one of the probable scenarios for the formation of a stuttering child? I am glad you are looking into this Nan, (smile) Kkkkeith
From: Tom Weidig (thestutteringbrain.blogspot.com)
"We have NO data to suggests that parents play a role in either stuttering onset, or its recovery/persistence." Wait Nan. How about Lidcombe? Dr Shenker claims in her first sentence of an article here that "Direct treatment for preschool age children has been shown to be effective in eliminating stuttering." So parents do play a significant role: Those who do not take their kids to Lidcombe or don't do the exercises properly prevent a potential recovery! ;-)
From: sachin (TISA)
I dont claim to have understood everything in the preceding replies (will keep on trying :-) But I found it very enlightening. I am waiting for an expert opinion on the last issue: Lidcombe- does it really do anything of statistical significance?
From: Nan Bernstein Ratner
Tom, I meant parents doing what parents normally do, not acting as therapists, as they do in Lidcombe - I am sorry if that misled you. Nan
From: Carolyn
"We have NO data to suggests that parents play a role in either stuttering onset, or its recovery/persistence." Tom then asked about Lidcombe which Nancy dismissed, giving as a reason that in this case the parent was playing at being the therapist. But what about Parent-Child Interaction? Hasn't it been reported that one parent can communicate well with the child, but the other does not (often the dad)?
From: Nan Bernstein Ratner
It may very well be that one parent may interact better with a child than another in any cases of child development. We have no data to suggest that specific patterns of parental input or response to stuttering either cause or perpetuate stuttering, other than those cases in which they act as surrogate SLPs, such as in the Lidcombe program. Nan
From: Vasu Parameswaran
Hi Dr. Drayna, I had a couple of questions for you (you may remember me from the NSA Rockville Chapter :-)): 1. Is there any research being done or planned on the possible role of epigenetics on stuttering? 2. I read an interesting article recently that talked about challenges to the so called "common variant hypothesis" (see http://www.scientificamerican.com/article.cfm?id=revolution-postponed What does that mean for genetic research into stuttering. Should researchers focus more on the genetics of extremely severe stutterers?
From: Retz
Interesting, Ken. As I read your post, I thought back to a conversation I had years back at an ASHA Conference. (It sounds like perhaps the same person you had spoken with who is now deceased.) In my conversation with this person, they shared more details than in your description of the "bet". This now deceased person told me that a man once bet ($50.00) a well known leader in stuttering (now deceased) that the leader could not make a certain individual stutter. The leader reportedly took the bet and did, in fact, win! This now deceased person also shared with me that the now deceased leader who won the bet had discussed how this might be done with another well known leader in stuttering (who is also deceased now) who had done some research related to this. This now deceased person also shared a number of other interesting stories about the now deceased leader in stuttering (the leader who took the bet). Seems this same now deceased leader in stuttering would have a group of protege's up to his cabin in the U.P. and over the course of them being together, make a special stew, goulash or chili supper for them with a "special, secret" ingredient none of the protege's were aware of - Nightcrawler's!!! Anyway, seems like all those well known leaders now deceased had a kind of unique sense of...well, whatever one might call it. Unfortunately -- or perhaps fortunately -- dead people can't talk. Look forward to catching up with you sometime.
From: Ken St. Louis
Hi Retz, So that's it. Eating worms can cause stuttering?
From: Pam Mertz
Not sure this is much of a question, but guess I would like an opinion. A good friend of mine stutters and he is frustrated with therapy. He stopped going for a while and has recently resumed, but shares with me that it is too slow and he feels he is being asked to do things he has already done. He feels since his job entails talking all day, he needs strategies that are going to make an impact right away. He asked me for suggestions. I suggested voluntary stuttering, since his issue is embarrassment and panic when he stutters at work. We skyped one night, and I suggested how he could VS on repetition and prolongations, and do it at beginning of words and in the middle. We practiced together doing it, which he felt quite comfortable with. He has been doing it, and says it has been great, that he actually feels more in control. I am not a SLP obviously, and he knows that. We are friends sharing the stuttering experience. It seems to help him to try VS and then talk with me about how it feels and works. Is there any reason not to do this? ~ Pam
From: Vivian Sisskin
Pam, Each person's experience with voluntary stuttering is very different. It can be a great fear reducer, and depending on the form of voluntary stuttering used, it can be good motor practice for potential modifications. I find that keeping a clear rationale in mind for using voluntary stuttering is important, for example, 'I am voluntary stuttering in order to show myself as a PWS', or 'to give up fluency and benefit from some of its desensitization power'. I am not sure about being a 'bad' thing, but I have found that it can become a less helpful strategy when people use voluntary stuttering to 'sound better'. Just like anything that is added to the speech pattern that is new/novel, it can produce some initial fluency or can mask long-standing behaviors that are maintained by fear and avoidance of stuttering (holding back, postponement, blocking). If it makes you feel good because it is producing more fluency, then it may not last' I guess it's all about your intent. Vivian
From: Pam
It's not about me feeling. It's about a friend who feels this is really beneficial for him because when doing VS, he feels less panicked and more in control. He is not using it for fluency - just for desensitization, mostly. He feels good , so I feel good that I could help!
From: sachin (TISA)
Hi Pam I am not an SLP or a professor- but I have practiced VS myself and taught it to other PWS in our self help groups. (In our Indian context, it is quite okay in a self help framework). My experience has been good with VS: it helps thru desensitization; it promotes inner Acceptance; it gives the PWS a chance to practice block corrections. Finally it helps, by letting people play with their stammering and study it. Doing it first time can be frightening for young people. Only thing- some people do it for a few days and then slide back into old avoidance patterns... sachin
From: Kevin Eldridge
Pam, You've already gotten comment about VS, so I'm going to pass on that aspect of your post. What caught my attention was that your friend "...shares with me that it is too slow and he feels he is being asked to do things he has already done." Do you think maybe your friend needs to speak to his therapist? It sounds like the SLP is setting the goals, and not your friend. I think that would frustrate me as well. For those of us who have been through a lot of therapy, it is easy to think the SLP is the expert. But in reality, the person who stutters knows WAY MORE about their stuttering than the SLP. My goal as an SLP is to help my clients to help me understand who they are and how their stuttering plays out in their life. The better I understand that, the better I can help them to help themselves. Maybe your friend needs to remember that HE is the expert, HE is the one paying the bill, and therefore HE is the one that should be setting goals (or SHE if that be the case).
From: Pam
Kevin, excellent points. My friend is attending the same therapy program that I was for a while. I no longer attend. The therapy is provided by grad students, under the supervision of licensed clinicians. There is a given that in this type of situation, it is a give and take, and the students are learning from us "experts". Nonetheless, I have told my friend he still needs to speak up and let it be known what he needs and wants, that it absolutely has to be a partnership, and client driven. I think I am a little too outspoken, and not everyone is comfortable being assertive like that (or wants to deal with someone who is assertive, as I have learned). But I think that is part of the learning process for students as well. It has to be a two way street. I was feeling similiar frustrations, and coupled with other circumstances, I no longer participate in speech therapy. But I am really glad you pointed this out. I will let my friend know that it is not "just me". :)
From: Diane Games
Pam....you don't have to be a therapist to give a friend some good advice. Sometimes a suggestion from a friend encourages, support and give someone the courage to do something outside of his/her comfort zone! In my experience as an slp, the more comfortable an adult is with suttering, the better...take care, Diane
From: Ellen Henkelman
In light of the number of support groups available for people who stutter, I was wondering how common it would be to find support groups for parents of children who stutter? As a student of communication disorders who is learning about the differences between typical and stuttering like disfluencies, it seems important for support to be provided for families who may be going through this challenging and unsure time of whether their child is stuttering or not.
From: Lynne Shields
Ellen, I agree that parents of kids who stutter do need support. While the National Stuttering Association and Friends: National Association of Young People Who Stutter are support group for people who stutter, they also provide support to families. I help to organize an annual day-long workshop for kids who stutter through Friends. Not only do we plan activities for kids, but also for their siblings and parents/grandparents, and also SLPs who want to learn more about stuttering. I think that the NSA sponsors similar events. Both Friends and the NSA have an annual convention in the summers, and families are included for both fun and support. Great comment--thanks. Best wishes as you continue your education. Regards, Lynne
From: Marybeth Allen
Hi, I will add to what Lynne has said. Lynne has been involved with FRIENDS and their day long events and conferences, and I am on the Family Programs Committee of the NSA. NSA has a three day conference each summer and within this conference format, there are three days of parent workshops. The parent workshops center on sharing experiences, support, and education about stuttering. FRIENDs and the NSA also sponsor several day long "Youth Days" scattered around the country each year, where parents can get together for support. There are also several local NSAKids chapters in various cities, where both kids and parents get together on a regular basis. In these meetings,in addition to the regular support they provide, leaders often bring in speakers of topics in which parents have expressed interest. So, this is a great question and as you can see, parents do have opportunities to find this support and networking. Best of luck to you in your studies. Marybeth Allen
From: Dick Mallard
Ellen, this is an excellent point. I directed a two week residential family stuttering program for children for several years that was modeled after the Michael Palin Centre's work in London. The entire family had to attend. I will not work with children without family involvement. I can tell you for a fact that parents of children who stutter need support that group meetings would provide. Many parents had never known that other children stutter and believed they were all alone. I could go on and on about this. The child who stutters will have the best chance of improving when the communication environment is involved in the entire clinical program. For children, the main communication environment is the family. Parents must understand the relevant issues for their child and how to reinforce them in their daily activities. Yes, parents need support and yes, they are the key in many cases for the eventual success of their child. Again, great post.
From: Sheree Reese
I agree that working with families is vital. We have 3 NSA groups (children, teens, adults) going on at the same time. At least one of the group leaders (and often members of the adult group) take parents/family to a separate room and answer questions and lead discussions while the groups are meeting.
From: Lee Caggiano
Excellent question! After sitting in on one parent group, you will see the immeasurable value in providing parents with support. At the Friends events we have begun organizing parent groups that allow for interactions with other parents/adults who stutter/ and children and teens. Providing parents with the opportunity to REALLy talk with other kids, or teens, about stuttering has proven to be one of the most popular workshops we offer. We can all learn so much from each other...when given the chance Lee Caggiano
From: Diane Games
The project that I run each year has a special program for parents...and it is great. We are going to start a list serv this year with the parent group to to the issues you have discussed. I so feel that it "takes a village" to help kids/teens who stutter! and parents are an important part of the process.
From: Ari (Israel)
i see in forums and sites: "SLP'S" and other "experts" that say something like "if you don't stutter in all the situations, your problem is emotional and not genetic" and it really " piss me off". What proof we have to this theory, we found in half of the cases stuttering history, but did we really know what is the cause of the other half that don't have stuttering history in the family?
From: Dale Williams
You're right Ari--it's not a very sensible thing to say. There's nothing about the neurology of speech to indicate stuttering can't be situational. Thanks for pointing that out.
From: Kevin Eldridge
If someone can walk on a flat surface, but not walk in sand or up a large incline, would we say that their problem walking is emotional and not genetic. I doubt it. So you are correct Ari. It makes no sense to say that if you don't stutter in all situations it is because of emotions.
From: Jolene Tieva
My friend's nephew has a stutter. He only stutters at home but not at Grandma's home. His home life is loud, unstructured, and his parents yell frequently. Would his stutter disappear when he's not in a stressful environment?
From: Gary J Rentschler
Jolene, its actually quite common for someone who stutters to have more difficulty in some environments than in others. As you pointed out, the background noise, distractions and unstructured character of this setting can contribute to having more speech disfluencies. Also I've seen that some people are effected more than others.
From: David Shapiro
Hi Jolene, What a good question. Indeed stuttering often is influenced by environmental events. It would not be surprising if one's stuttering is more pronounced in loud, stress-filled environments and less pronounced in calmer environments that are more conducive to conversational interaction. Many different intervention programs attend to adjusting the conversational environment in order to facilitate speech fluency. Perhaps you or your friend might observe to determine where the individual's stuttering is more and less noticeable. That would be of interest to support the individual's communication needs. You sound like a good, caring friend. Good luck, David
From: Ari (Israel)
I want to ask: I know that a son of one parent stutterer, have 4 percent chance to stutter. Did you find differences in this" 4 percent chance" between families with history of stuttering, and families that the only stutterer in the family is the parent himself?
From: Lynne Shields
Ari, I am not sure whether I am understanding your question. Findings regarding inheritance patterns and stuttering typically report somewhere in the neighborhood of 30-50% (the percentage reported varies pretty widely from study to study) of individuals who stutter have a family history of stuttering, suggesting that there is an increased likelihood of stuttering occurring among the children of someone who stutters. This does not mean that any particular child will or will not stutter, just that there is a higher chance of stuttering developing. Please clarify your question, if I have misunderstood you. Regards, Lynne
From: Ari (Israel)
OK i will try to ask this differently. If i am a stutterer, what is the chance that my son will stutter? Did it matter if i have history of stuttering in my family or i don't have (in my case i am the only stutterer in my family)? And i will add did we have a study to know what is the chance if both parents stutter that their son will stutter ? I hope this is more clear!
From: Lynne Shields
Ari, Thanks for clarifying your question. As a person who stutters, I would say that there is an increased chance that you will have children who stutter if your stuttering is, in some part, genetic in origin. The difficult thing would be to know for sure whether or not there is a genetic susceptibility within your family. Just because you are the only one that you know of in your family who stutters does not necessarily mean that there is no history in your family. A family member from another generation may have stuttered and figured out how to manage it on their own, or conversely, stuttered, but figured out a way to hide it so that no one else in the family was aware of it. I have had several adult clients who hid their stuttering so well that their own immediate family did not suspect that the problem existed. Another issue relates to the size of your family in looking at history. If you have a very large family--many aunts, uncles, cousins, siblings, etc., then your being the only one who stutters might suggest that the cause is not genetic for you. However, if you come from a relatively small family, or not that much is known about the speech history several generations back, then it is more difficult to know whether there is a genetic link in your family. I am certainly not an expert in the area of genetics, but those are a few thoughts that may be of help to you. I have not seen any research looking at the likelihood of stuttering varying depending on whether one or both parents stutter, although I would suspect that there might well be a difference. There may be such a study--I am just not aware of it. I wonder if you are asking this question out of specific concern about your children. If that is so, have you seen symptoms of stuttering in one or more of your children, or are you concerned for another reason? I hope that Dennis Drayna, who is on the list of 'The Professor is In' might respond to your question, as genetics is his field. Best regards, Lynne
From: Tom Weidig (thestutteringbrain.blogspot.com)
Rosalee Shenker writes in an article here: "Direct treatment for preschool age children has been shown to be effective in eliminating stuttering." I find this highly misleading. First of all, she doesn't mention the natural recovery rate. So a clinician can NEVER know whether they have been effective or whether it naturally happened. Second, she doesn't give the evidence. The not-independent long-term study shows relapse. AND no-one ever mentioned that many children could NOT be contacted any more. Third, stuttering has a neurobiological basis some of which is genetic. NO behavioural treatment will ever change the genes and at best re-shape behaviour to better deal with a neurobiological deficit. But that's hardly an elimination. I would like to hear people's opinion on her claim!
From: Judy Butler
I would like any information at all, even anecdotal, regarding the influence of medications (for other conditions) on stuttering. I have students taking various medications for asthma and ADHD, for example. Any literature references would also be helpful. Thank you, Judy
From: Ken St. Louis
Hi Judy, Good question, but I don't know this area as well as others on this esteemed panel. I do know that the "old" STUTT-L list (just recently terminated) has had a number of threads over the years where individuals who stuttered wrote about various medications that either made them stutter more or less. There was some talk about saving the archives of the old STUTT-L (not to be confused with the new Google group also called stutt-l). Maybe Judy Kuster can comment on that. If those archives are available, you could go through and find lots of anecdotal reports. The problem with anecdotal reports is that it becomes very risky to generalize from them. On an obliquely related note, I guest edited a special edition of the Journal of Fluency Disorders about 15 years ago on cluttering, where we asked for all the anecdotal case studies and small group studies we could get. The issue was built around making some sense of all those disjointed reports. I'll leave to others to comment on whether or not we succeeded. At that time, I thought someone should do the same thing with drug effects on stuttering. Maybe it really is time for such an issue. Of course, in recent years, some quite good studies have been carried out (with a few dissenting opinions) investigating Pagaclone. Aside from rambling a bit, I hope I offered some food for thought. Ken
From: Judy Kuster
Ken, Russ Hicks asked Temple to send him a zip file of all the archives of the now-defunct stutt-l. We hope that we will eventually be able to find a new home for them, but they are not available now.
From: [no name]
Hello Judy, Medications commonly used for ADHD, such as Ritalin, Adderall, Strattera can have stuttering as a side effect. This adverse effect tends to be dose-dependant, that is, higher doses are more apt to trigger stuttering.
From: Klaas Bakker, Springfield, MO
Could the person who provided the last response (I am sorry I didn't see a name associated with the answer) give some background on what led to these experiences (eg medical practice, literature, SLP having much experience with ADHD, ADD)? I find these experiences very intriguing. Also, I am wondering if there are similar experiences out there regarding cluttering. Thanks.
From: Nathan E. Lavid, MD
Hello Klaas, I apologize for the anonymous post. I forgot to add my name to the previous post. The association with these medications and stuttering is well-established clinically and is understood from a physiological standpoint point as they increase the dopaminergic activity in the brain. This phenomenon is also observed in Tourette syndrome with the increase in tics with these medications. It's difficult to make the same association with cluttering, as it's not as nearly an established clinical entity as stuttering - which doesn't allow an easy comparison with the medication.
From: Judy Butler
Please share any information about the possible influences of learning disabilities and stuttering. I am spending a lot of time these days learning about reading since dyslexia seems to be a recurring theme in my private practice for stuttering. "Reading in the Brain" by Stanislas Dehaene (2009, Viking), besides being really interesting, states that "the left temporal lobe remains the prime suspect in our quest for the biological origins of dyslexia" p. 246. I am not in research and so this might sound muddled, but does anyone think that treatment for dyslexia along side treatment for stuttering could increase rate of therapy progress and why that hypothetically might be possible given that they could both be related to linguistic ability? What do we know in 2010 about the relationship between stuttering and learning disabilities? Thank you, Judy
From: Judy
Well, let me throw out an idea...reading (an perhaps many other skills)may rely partially upon learned material that is accessed quickly when needed. So, for example, children study sight words so that these words can be recognized and read quickly and without effort and resources can be spent on reading more difficult content. These sight words are perhaps somehow stored in the brain for quick reference. I wonder if the DIVA model of speech processing could be generalized/expanded to speculate that if semantics and literacy skills are not well established as targets for a feedforward process, then speech fluency could be affected. Then, if semantics and literacy skills were improved some positive effect might occur in speech fluency too. Ahhh, I wish the next generation of researchers the best in working out the possibilities! Perhaps the fields of language and literacy have already done this. :)
From: Pam Mertz
Today a first time listener to some of my podcast episodes emailed me with feedback. She is a member of a group I joined about a year ago, but she and I had not met in person until just recently. She does not stutter. She commented that I had a great voice, and could hear seriousness, warmth and humor. Then she wrote: "One question that occurred to me in listening is are stutterers ever tempted to learn sign language so they can sometimes talk unimpeded? And do people learn to cope and compensate as they get older- is that why the older women seemed to have less apparent stutters?" This was a prime opportunity for me to educate her, and I think I responded well, but am just curious how professionals might answer this one! ~Pam
From: Ken Logan
These are both interesting questions. I'll try to tackle the first issue (stuttering and signing). There hasn't been much research on the sign language skills of people who stutter. I can provide some anecdotal information based on my personal experience. For the first five years of my career I had the opportunity to work with several youngsters who had profound hearing loss. (This was back in the days before cochlear implants and we were using a total communication approach with Signed Exact English.) I signed with the kids every day, and never once did I have movement difficulties that, in my experience, were directly comparable to the ones I had in my speech (I should add here that I stutter.) That is, I never experienced difficulty initiating movement sequences (like I did often in speech) nor did I have what might be regarded as "part-sign repetition" (the analog of part-word repetition). That said, although I was competent with signing, I never regarded myself as a particularly fluent finger speller. I'd make a fair amount of errors, which I'd then have to stop to revise (or spell slower). Recent research on motor learning skills in people who stutter (e.g., Luc De Nil & colleagues' work) has shown that adults who stutter show evidence of impairment (in both speech and manual movements) during tasks that involve the acquisition of sequential motor movements. Based on this, I wouldn't be surprised to learn that people who stutter show subtle deficits in movement while signing. Still, in my experience, any such deficits that I might have had in signing did not feel to me like "stuttering."
From: Ora McCreary
Just a comment from my own experience... A colleague at work once asked me that question (have you ever considered learning sign language?). This was during a period when my speech was not good. I never had, and told him so; to me, it would feel like giving up; and besides, who was there to communicate with, since no one I knew knew sign language. I was troubled by the question.
From: Pam Mertz
I was a little surprised by the question myself, but then I had to put it into perspective for her. I believe I am the frist person she has met and had a real conversation with and I stuttered openly. And then she listened to a few podcst episodes with me and other women who stutter, some with lots of struggle. She may have been thinking it was a helpful suggestion, but I replied that it is always best tolisten to what we say, not how we say it, and that we who stutter can teach people how to be better listeners. Thanks for sharing what you did!
From: Ken Logan
As I was re-reading my first response, I see that I neglected to say that I don't think many (any??) people who stutter would opt to substitute signing for speaking - at least in any kind of extensive way. I have, however, had a handful of parents of children who stutter ask me about sign language as a (temporary)alternative speech (i.e., until the child learns more effective fluency management skills). In line with what you both have suggested, this has not seemed like a very appealing solution to me!
From: Pam
So when the parents asked you about it, what had been your response? And it would seem to me that teaching a hearing child sign language might be very confusing for the child, since they are already in the throes of normal language development anyway, right? . . . . . I did not get a response back from the woman who asked me this. And she is usually quick about emails. I am hoping that she took my response in the spirit of awareness and education. Thanks for replying again.
From: Ken Logan
There's only been a handful of parents who have raised this over the years. I basically have responded that the goal of treatment is almost always to help children (or adults, for that matter) communicate as effectively as possible using speech. I then have discussed the many pros associated with becoming proficient at managing stuttering effectively, as well as the limitations of sign language (e.g., very few of the child's classmates or teachers will know it, thus the child's participation restrictions would very likely be much greater than they presently are).
From: Dick Mallard
I have never known a person who stutters learn sign language to cope with stuttering. That would certainly restrict with whom they could communicate. Yes, I do believe that coping skills and seeing life in general from a different perspective helps older individuals with stuttering or any problem. How does this correlate with what you answered?
From: Gloria Klumb
Hi Pam Sorry I am so late in getting caught up on all these questions. But Yours struck home. I had a speech therapist as an adult who taught sign language. He suggested to me to try learning sign. He said it would take my mind off of stuttering and maybe help with the speech. Thinking of how to make a sign and speaking at the same time was not my thing. I can't remember which got tangle up more, my hands or my stuttering. LOL But it was fun learning sign. Was pretty good at it to. But don't use it so lost it. Thanks Pam..gloria
From: Ora McCreary
I recently discovered that there's a new diagnostic code for stuttering - 307.0. See "2010 ICD-9-CM Diagnosis Codes - Related to Speech and Hearing Disorders", http://www.asha.org/uploadedFiles/2010ICD9Codes.pdf And http://www.z2systems.com/np/clients/nsa/news.jsp?news=78 . It seems odd that the code is placed within a section that describes "Neurotic Disorders, Personality Disorders, and Other Nonpsychotic Mental Disorders" and "This category is intended for use if the psychopathology is manifested by a single specific symptom or groups of symptoms which is not part of an organic illness or other mental disorder classifiable elsewhere." This category also includes things like masturbation, thumb-sucking, selective mutism. But I thought that it's now generally recognized that developmental stuttering is fundamentally neurologically-based (an organic condition), not psychological, so why would it be placed within a category of psychopathologies? Obviously there may be secondary effects from stuttering which are psychological. But this category appears to be specific to the stuttering itself, not any secondary psychopathologies. Can someone explain the significance of the new categorization? What's been changed? Is there somewhere I can look, or perhaps someone I might ask, to find a substantive discussion of the rationale for this new code, and how it's described and classified? Thanks.
From: Nan Bernstein Ratner
As the author of the initiative, let me say a few words. First, it is NOT a new DSM code, although that may be coming. It is an ICD code (broader, more disorders are covered)change. Stuttering has always been in this chapter (300 series, Mental Disorders). We moved it from its local environment, in the series you saw, to one that is less controversial, in the 315 series, which addresses children's communicative development. In the revision of the DSM-V, coming soon, the terminology in this whole section is being changed to reflect that "Mental Disorders" is an old term with negative connotations. In the meantime, we have moved the "default" code for most of stuttering to 315, in communication, added two new codes for neurogenic stuttering, and left the old code only to be used for what we would generally call "psychogenic stuttering", although that term is also not preferred these days. The two links you post are good summaries of the changes, so I WOULD RECOMMEND PEOPLE LOOK AT THESE LINKS TO SEE THE CHANGES. I can of course continue to clarify questions people might have. We changed the codes to move stuttering out of the negatively-perceived LOCAL sequence in 300, and to add codes that would allow us to track the different forms of stuttering, not previously possible with the single old 307 code. Nan — Also, you seem to believe that 307 is the new code; it is the OLD code that we have basically replaced. 307 is now really more appropriate for someone who might have a "psychogenic" stutter (and these are mighty rare). Nan
From: Ora McCreary
Nan - thanks for the information. But I'm a little confused. The document I found was titled "2010 ICD-9-CM Diagnosis Codes" (http://www.asha.org/uploadedFiles/2010ICD9Codes.pdf and I assume that's what you're referring to when you write "The two links you post are good summaries of the changes, so I WOULD RECOMMEND PEOPLE LOOK AT THESE LINKS TO SEE THE CHANGES." But this document does not include the new 315 code or the two new codes for neurogenic stuttering. Am I looking at the right document? Also - and of more direct interest to us consumers of speech therapy - do you anticipate that this ICD revision, or the anticipated DSM revisions, are likely to result in any increase in insurance coverage? Particularly, I would think that such a change could result from an acceptance that most stuttering is fundamentally neurologically based, replacing the old belief in the "neurotic" causes of stuttering. Thanks.
From: Nan Bernstein Ratner
Sorry, I didn't look at that URL carefully, and it is not the one I thought it was; please go to http://www.asha.org/Publications/leader/2010/100921/New-Codes.htm for an updated document from the most recent ASHA Leader (I will try to get ASHA to fix its search, because bad stuff came up when I tried to find it, and I KNOW what I am looking for :-( Anyhow, insurance ramifications are unclear, and many were not happy with the compromise move to 315, still in DSM territory in addition to ICD codes (the 400- and 700-series codes are not in DSM coverage areas). We carefully inserted the terminology of CHILDHOOD ONSET FLUENCY DISORDER in order to emphasize to payers that this is not a "developmental" disorder present from the onset of communicative development, because in fact, we don't have that documented in any cases (now I know I will hear lots of personal stories, but I stand by my statement. If anyone out there hears a toddler stutter from their first words, I want a videotape IMMEDIATELY!) ASHA, NSA and SFA are all providing guides you may request to state that stuttering cannot be automatically rejected just because of its placement in the 315 series. But for some people, it was taking stuttering out of the frying pan at 307 and putting it into the fire at 315. It's still a work in progress, as the DSM V is still in editing and no one has even tackled the American version of the ICD-10, what the world already uses. Nan
From: [no name]
The first post in this series asked some clear and interesting questions. The exchanges that followed use a plethora of acronyms as well as some jargon. Additionally there is the confusion about which site to visit. All this is going to put off lay readers who have been trying to follow this thread to learn about the proposed new ways stuttering is to be diagnosed. Might I respectfully suggest that a clear statement is given about what DSM is, why it is designed in the way it is (to give a client one and only one diagnosis), and how psychiatrists, clinical psychologists, speech language pathologists etc. use it on a day-to-day basis. Then if you could describe what the situation was prior to the new ICD code (after you have defined this acronym). Then you could tell readers what has changed and provide justification for these changes (what Mr McCreary originally asked about). Finally, can you inform us who has been involved in the discussions that have led to these new proposals, how the proposals are judged and what consultation has taken place? This will allow more people to be involved and increase the validity of this exercise. DSM and ASHA documents are written by professionals for professionals, but these ISAD discussions are intended to serve the needs of a wider range of readers. With this goal in mind, I hope my suggestions help make these issues accessible to all ISAD readers
From: Nan Bernstein Ratner
My apologies for not seeing this earlier. For those of you with good visual memory, I was not originally in the mug-shot line up of "experts", but got pulled in to answer Ora's original question.
Let's start with the abbreviations.
DSM is the Diagnostic and Statistical Manual of the American Psychiatric Assn. It is currently in DSM-IV (version in use), but extensive, multi-year work has gone into a pending revision.
APA controls the manual, which is used to code diverse disorders once considered within their sole purview (e.g., childhood communication disorders were coded as "infantile speech" in early versions, suggesting that they were a manifestation of underlying psychological problems). APA has solicited other groups to comment on the upcoming DSM-V, though they don't have to listen to anyone, because it is their publication. But ASHA has been invited to participate and has been very active in providing feedback, especially, but not limited to, coding of autism, and some other communication disorders.
The ICD (International Classification of Diseases) is actually a HUGELY important coding scheme, used world-wide, and by most disciplines that have any health focus. It provides numerical codes for tracking and justifying local reimbursement schemes for a dizzying array of human conditions. The rest of the world is currently using ICD-10, but the US protested that we needed more lead time to gear computer programs up, so we are still using the ICD-9 until a few years from now.
Finally, as I indicated earlier, but perhaps this background will clarify somewhat, there is a sort of "gentlemen's agreement" that the codes in the DSM and the ICD should line up and be similar when the condition under discussion is coded in both manuals. This of course is true for a wide range of disorders. There are pretty decent informational articles about both of these manuals out there on Google in many locations. I can try to recommend specific ones if folks aren't happy with what comes up readily in searches.
When ASHA got the request to try and move/enlarge the current stuttering codes, the thought was to start with the ICD-9, because the APA had been somewhat resistent to changing the code in DSM in prior correspondence. Since the two are supposed to match eventually, we decided it might be better to start with the ICD, also because changes to it are "vetted" or responded to by many other organizations (in our case, Academies of Pediatrics, Neurology, etc. made comment, as did our Office of Veterans' Affairs and other groups). They were definitely more interested, in our first proposals, than was APA, and this helped the initiative get some traction. The process for making changes in the ICD-9 stays in the US, because we are the only ones using it now (:-(). The physical process is to submit a brief to the US Centers for Medicare and Medicard (CMS),who oversee the process. In this case, ASHA worked with me and with Professor Luc De Nil, who had been charged by the ASHA Special Interest Division on Fluency, to try and make this happen. The brief was reviewed, we submitted some supporting letters from NSA, SFA, IFA, and other groups, and was scheduled for public hearing.
The first public hearing was held in a darkened auditorium, where people literally sit for two days to consider how to add codes for new and novel conditions, or re-code old ones. It is not all that stimulating, frankly, until it is your turn. Then you get about 5-10 minutes to explain what you want, and mikes go live in the auditorium and even on open phone lines for those who follow this stuff. APA of course showed up, and was still not in favor, although other groups expressed support. It was then necessary, over the next year, to oobble out an agreement that was acceptable to all parties, and the final code changes that were released on Oct 1, 2010, were the result.
Without going into too much detail, here is the set of changes in a very brief nutshell.
There was only 1 old code for stuttering (307), under Mental Disorders, and in a bad section, as people note (near bedwetting, masturbation, etc.) Quite Freudian in feel, frankly. We added three new codes, and limited use of the old one in the following ways: We made the DEFAULT code (in other words, if people write stuttering as the diagnosis, and nothing else, this is the code that will be used) a code in the 315 series, which codes most of the other speech and language disorders in children, but added a term not usually seen in those codes - childhood ONSET stuttering - because insurance coverage has sometimes been denied in this series because the problem can be considered developmental or pre-existing. We added a code for fluency disorder following stroke. Then, because a bunch of groups kept mentioning fluency problems in too many conditions to make much sense, we added a code in the 700 series for fluency problems that were merely symptoms of other major conditions, so that one could code for fluency treatment secondary to other medical problems.
Finally, we limited the old 307 code to "fluency disorders not coded elsewhere", which, by process of elimination now made that entry essentially only applicable to stuttering that seems "psychogenic" in origin, in which case it is not so bad in that section of the ICD.
A good question is - what about the DSM? The last public information about the DSM (I can supply a link, but this is getting long) said they were not considering changes to the 307 code, but that was BEFORE the ICD code changes were approved. We have had private email correspondence from APA that does reassure us that they won't forget to "take care of this" in the new DSM revision (again, still in process). Because they still have two of the four codes (the default code and the old code) covered by the DSM, we think they will act in good faith to do this, as they have said they will.
THEN, if any of us still have any energy, we will need to tackle the ICD-10. This will not be entirely trivial, although a lot of the heavy lifting will have been done, because it had already changed some items in both the old 307 section and the communication disorders series. So, we will have to make sure everything fits properly with revisions that have already been made, but we are very optimistic. One set of questions was about who had input to this process. I hope I have shown that we did ask for broad support among stuttering organizations, whose individual steering boards provided support letters. The issue was covered at multiple ASHA conventions, particularly in Special Interest Division meetings, to make sure ASHA members were on board. We do think we tried to be responsive to everyone, and in fact, it was the consumer groups who asked us at ASHA and the Specialty Division, to do this (move the stuttering code) - it was not initiated, this time, by ASHA itself. They only helped to make it possible. And so, before signing off what should perhaps have been a conference presentation itself, I would like to personally thank Steve White of ASHA, who sat through all the endless meetings and negotiations patiently and bird-dogged it to what we feel is a good result.
If this doesn't help the person who was upset with the thread, can you please tell me specifically how I can help provide clearer information?
Thanks, Nan
From: Erik Nielsen (Arlington Heights, illinois)
Well I've been in speech since i can remember. Iv never really had a stuttering problem, I've just always what people call a speech block. Its gotten better over the years but i still have issues when i speak. It will start off with a block and then draw out and its very embarrassing and annoying. I don't know what to do about it, i sometimes avoid saying something in class, and or with friends or in an outing. If you could give me some advice for me it would be very helpful. Thanks again!
From: Lynne Shields
Erik, It sounds as if these blocks are causing you to change when and with whom you are choosing to communicate, and are also causing you to have negative feelings about speaking. If you would like to learn how to manage your speech more effectively, then seeking out a good speech-language therapist can be of help to you. If you are experiencing tension in your speech mechanism or other parts of your body when you have a block, then one way to manage this is to learn how to let go of the tension, so that the block is shorter and less tense. It does take time and effort to do this, but a good therapist can help you work out a set of steps to speak with less tension. This is just one technique that could be helpful for you. Whether or not you see yourself as a person who stutters, it certainly seems that your speech fluency is being impacted by the blocks. You might consider looking on the Stuttering Foundation of America's website or the Specialty Board on Fluency Disorders to locate speech therapists in your area who may be able to be of assistance. You can Google those two organizations to find their websites. I wish you all the best, Lynne
From: David Shapiro
Hi Erik, Even though you've been in speech, asking for advice, as you just did, is a big step. Stuttering can be puzzling; I know. I noticed you indicated that stuttering never has been a problem, yet you experience embarrassment and avoid speaking in certain situations. Sounds like both the stuttering and how it affects you may be variable. I agree with Lynne that talking candidly with a speech pathologist about your feelings and thoughts related communication is a good route to go. You can talk with the clinician about what you would like to achieve and, together, you can decide how you might proceed. There are many ways to approach improved communication. Many people, like you, who have had previous treatment, are considering how they might approach the challenge differently. Help and understand are available. Talking with a clinician with whom you feel comfortable is a good start. Your clinician will appreciate the initiative you are taking. Good luck. David
From: Vivian Sisskin
Erik, You have some good advice from Lynne and David. With therapy, you can learn to change the block into a different kind of disfluency, something more forward-moving and less shameful, but you can also try some things yourself.. but it takes courage. I thought I would talk a little bit about the block: In some cases, the block is what happens to a disfluency when it is 'wrapped in fear'. That means that the moment you anticipate the disfluency, you hold back, tense, and prevent yourself from moving to the next sound in the word (frozen.. silence). Your fear of making that noise makes you chose the alternative, escaping by holding back. Therapy strategies that encourage you to 'pullout' of the block are successful when the fear of 'making the embarrassing noises' is very low. But, in most real life situations, the fear is very high. Instead of trying to make the block 'sound better' you can try to get sound in the block. That would be doing the thing you fear the most! This requires courage, anticipation of feeling shame, and willingness to tolerate the shame. It is best done in situations where you are willing to have this happen' a store clerk (where you ask a question and then leave), a short phone call, or with someone with whom you are comfortable showing stuttering. Doing the thing you fear, avoid, or dislike (making stuttering noises) can be the remedy if you do them in very low feared situations and prepare yourself to feel some shame. Vivian
From: Toni Cilek
Erik, You have already made a positive step in beginning to analyze and explore what you do and how you feel during moments of stuttering. Seek out a speech pathologist and you will become able to more positively and constructively learn to change the behaviors, and as a result, the emotional response to them.
From: Ed Feuer
What are the consequences for people who stutter and the implications for therapy of noxious conversational uses of the term "stuttering" in the popular culture? Here's one of the latest manifestations: Fefe Dobson, a Canadian singer-songwriter, has a song called "Stuttering" which will appear in her new album coming out next month. In the lyrics she has a boyfriend who's a liar and a cheater. "You sound guilty coz you are stuttering" the singer tells the guy and she goes on to imitate stuttering. The message the kids soak in: stuttering equals lying and cheating. The complete lyrics are at
www.directlyrics.com/fefe-dobson-stuttering-lyrics.html where the song can be heard by clicking on the video.
From: Judy Kuster
Hi Ed! I also heard Fefe Dobson's song when it first came out — she was offering free downloads. And yes, I also find it really inappropriate to stereotype a person who stutters in the way she does. I think it perpetuates a negative image and it hurtful especially to teens who stutter when their peers like the song and could potentially use it to tease them about their stuttering. I'm not sure I feel so strongly about the term "stuttering" or "stutter" in conversational usage - you mean like football players who "stutter-step" or when a recording/disk "stutters," right? Most Google alerts I receive use the term like that in fact. But language can be hurtful, and if it is hurtful, people should respect that. I'm on a list about Down syndrome and the hurtful term that causes so much anger on that list is what they refer to as "the R word" (retarded). Some are also very sensitive of using person first language (e.g. person with Down syndrome). For your own interest, you might want to check a site on the Stuttering Home Page where I have collected information about songs about stuttering (http://www.mnsu.edu/comdis/kuster/media/songs.html). Some actually help people understand stuttering, others make fun of stuttering by mimicking, a few portray inappropriate stereotypes, and many examples simply have the word "stuttering" in them or use repetitions for the rhythm of the song (as my son explains, "A type of music, called minimalism, frequently relies on repetition of a few elements over a long time." Judy
From: Ed Feuer
Hello, Judy. I'm not talking about a "stutter-step" or what happens with a recording/disk "stutters." I'm talking about the noxious conversational uses of stuttering that connote lower intelligence, shame, failure or incompetence. Rather than repeat an elaboration (although stutters do it repeatedly), I refer, in order to save bandwidth, to what I said on this last year, including examples: http://www.mnsu.edu/comdis/cahn_mnsu_edu/12profin/_disc54/00000115.htm But there are real consequences and that does bear repeating: the noxious conversational uses of the term are the only frame of reference most people have about stuttering ' and it what happens when they meet someone who really does stutter should come as no surprise. They plug into those noxious conversational usages and the resulting unfair social and vocational discrimination is very real. In my view, the support organizations, for reasons of their own, are not doing what they need to be doing about this in the public arena. Therefore, it is incumbent upon ASHA and SLPs to do more in that public arena. I think the above does have implications for therapy. The resulting "bruised psyches" as Van Riper called it, require more than mechanistic exercises in the clinic room. What say you and any of the other profs? ' edfeuer@mts.net
From: Ora McCreary
Does anyone know the latest on pagoclone? Tom Weidig has posted some information in his blog in the past few months - http://thestutteringbrain.blogspot.com/search?q=pagoclone . Particularly the July 12 post (http://thestutteringbrain.blogspot.com/2010/07/breaking-news-pagoclone-did-not-meet.html includes an excerpt of a press release by Endo Pharmaceuticals, stating, "Although the study did not meet its pre-specified criteria for success, there were some trends of interest that Endo will look at more closely by conducting additional analyses of the data." Does anyone have any further information on the results of the study, or what are Endo's plans for further testing or development of the drug? Is there any reason for optimism that we'll hear more of pagoclone in the future? Or does this mean that pagoclone is dead? — I hope one of the experts on this panel will be able to provide more information on pagaclone or what we might expect from it. The success/failure of pagolone is a significant issue for me, personally, as a lifelong stutterer. And from what I've read and heard, many other stutterers have been also paying close attention to this issue. Jerry Maguire's talk was one of the best attended at the 2009 NSA convention, so clearly there's some interest in the stuttering community. I would imagine that the SLP community would be also be following the pagoclone developments with great interest, since it seems that a successful drug could be a significant aid as a component of speech therapy. Do any of the experts here have any further information regarding pagoclone, or any informed speculation as to its potential success or failure? If not, perhaps you could comment on whether it's likely that a drug to limit stuttering will ever be available, and if so, what would be the role of such a drug in speech therapy. Do you think it could it become a useful component of an SLP's treatment?
From: Nathan Lavid
Hello Ora, I was not involved in the Pagoclone study, but have some familiarity with it. In short, when evaluated by excepted research standards, it was not effective. This, obviously, is disappointing. In light of the study results, I doubt that it or other medications that modulate GABA activity will be evaluated further in stuttering. However, there are medications that have shown to induce fluency in stuttering, and these medications affect dopamine function. Unfortunately, these types of medications are not specific for areas in the brain that just affect speech, which can lead to other medical problems. The potential adverse effects are not benign, for example can lead to diabetes and cause symptoms that mimic Parkinson's disease. On a brighter note, psychopharmacologic research is progressing and medications are being developed to be more specific. If and when a more tolerable fluency-inducing medication becomes available, it will be a treatment option for those who stutter.
From: Ora McCreary
Dr. Lavid - Thank you for your response. You wrote, "If and when a more tolerable fluency-inducing medication becomes available, it will be a treatment option for those who stutter." Your seem to suggest that you may believe that it's premature for the existing drugs to be used for therapy for stuttering, and that we'd be better to wait for more specific treatments, with a better risk profile. I wonder if you can offer any information or opinions on the drug therapies that are already being offered by Gerald Maguire and his colleagues at their center at UC Irvine - which of course do include drugs with the adverse effects you've mentioned. (Perhaps others are doing similar things, but this is the group I've heard of.) Do you know what sort of success they've had in treating stutterers with the currently available drugs? Have they been able to navigate successfully between satisfactory therapeutic results and the adverse effects? Thank you.
From: Nathan Lavid
Hi Ora, I worked with Gerald and Dave in the past at UCI, but am not familiar with what they are offering at UCI now. I'm sure they would be receptive to a query. There are no FDA approved medications for stuttering, so they would be offering off-label treatment. Offering off-label treatment is within the standard of care, and I've used Serotonin-dopamine antagonists for some patients in my practice who stutter severely and demonstrate a response. Treating such patients can be complicated do to the side effect profile with these medications, but it is navigable.
From: Ora McCreary
My understanding is that drugs which Maguire's group has tried (including drugs which he's tried on himself) include: Risperdal, Zyprexa/olanzapine (which he was on himself for a number of years), and more recently, Abilify/ariprazole and Geodon/ziprasidone (which he's also taken himself for a period). Do you have any reaction to whether these off-label treatments are promising? Have you got any feeling about whether it would be reasonable to work with Maguire's group to try these medications, or whether it's still premature to pursue that approach. I'm not asking you for definitive information or opinions on issues which are not yet sufficiently investigated, but perhaps you could offer a personal sense of whether such approaches could be fruitful at this time. Beyond that, perhaps you could offer some guidance on how one might approach considering/evaluating such treatments. Should we simply relax now and wait, then ask these questions again in five years? Or is it reasonable to consider trying off-label treatments now (as long as they're being offered under the care of an experienced professional)?
From: Nathan Lavid
Hello Ora, It's definitely premature to try these medications ' all of which are in the same class ' without a comprehensive psychiatric/medical evaluation. The reason for my caution is the medications have potential for problems that are morbid. For example, Geodon can prolong the electrical conduction of the heart, which may lead to arrhythmia. This week, I had a patient with severe Tourette disorder who has failed other medications within this class and I offered a trial of Geodon. He has no prior or family history of heart disease and a baseline electrocardiogram (EKG) was normal. After a day on the Geodon, a follow-up EKG revealed prolongation of the electrical conduction of the heart and after a stat consultation with a cardiologist, we ended the trail. I'm providing this example to give you feel for the clinical decisions that are associated with these medications and why, even if they can offer some respite from stuttering, their administration has to be monitored carefully and competently. That said, meeting with a physician to discuss a trial of medication and what type of monitoring is needed of both fluency and possible adverse effects of the medication is reasonable now. An informed, face-to-face evaluation with a physician is only way I could recommend a patient with stuttering consider these medications, as it has to be a personal decision in the context of his or her medical history. As for the stuttering center, I do not know what Gerald and Dave are offering, but I imagine they would be receptive to queries. I hope in five years or so, there will be more options that are less malignant.
From: ASR
My fluency class was discussing a situational problem for a SLP. Here it is, if a client comes to you and has a stutter, but is comfortable with the stutter would you (the SLP) still continue therapy. I went further and asked my class and professor, what if the client was a doctor, and how would an SLP handle this case because doctors have frequent face to face encounters with patients daily. Having taken a class in interpersonal communication as an undergraduate , my class was very focused on rapport between doctors and patients, and how doctors want to see as many patients as possible for the economical gains. It would be known that a stuttering doctor could not talk fast and fluent, so this poses a tricky questions. I am interested others responses.
From: Lynne Shields
You posed the question "if a client comes to you and has a stutter, but is comfortable with the stutter would you (the SLP) still continue therapy". My initial response is that I would talk with the client about the issues that they face related to their stuttering. If they believe that they are managing communication well, despite their stuttering, and are not bothered by the stuttering, then I would see no reason to encourage them to receive, or continue to receive, treatment. If they have some specific goal in mind that they want to address, even though they are comfortable with their stuttering, then I would be more than happy to work with them on the specific goal. I am not in the business of convincing people that they need a service. Going that route is often a dead end, since without motivation to change in some way, real change is unlikely. It wouldn't matter to me whether the person was a doctor, a lawyer, a brick layer or a student. While time may be an issue for a physician, the fact that he or she stutters does not necessarily mean that they do not communicate quite effectively. If they are able to talk with patients and give appropriate care, stuttering may not be a concern for them in their profession. If it is an issue, then the doctor who stutters might wish to seek treatment. So, in my mind, the decision to seek treatment or not resides with the person who stutters. I can serve to help them sort out the issues and then the person is the one who must ultimately make the choice. Hope this is helpful to you. Best regards, Lynne
From: Lee Caggiano
Lynne, what a beautifully worded response. I agree with all you ahve said...and you said it so well. thansk Lee
From: Lynne Shields
Why thanks, Lee--I appreciate the kind words. And, I'll send the thanks right back to you, since I've learned quite a lot from you over the years about who owns what in the case of SLPs and folks who stutter! Lynne
From: ASR
lynne- Thank you for your response, I agree that only the person can make the decision to seek treatment.
From: John Kagie
Would you agree that most of the available stutter therapies are opinion based rather than evidence based? Should it be a target to migrate to evidence based therapy and who should be the initiator of this process? What should be the role of the national stuttering associations in this field? Looking forward to hearing your views, opinions and arguments, John Kagie (Netherlands stuttering association Demosthenes
From: Ken St. Louis
Dear John, Greetings from the other side of the Atlantic. Let me offer just one perspective on Evidence Based Practice (EBP)--mine alone. If I understand your query, that's what you want. I am absolutely sure that everyone on this esteemed panel would not agree with me, although some may. EBP is one of those concepts that virtually all sane people would agree with. It's like "Should only good teachers be promoted in our schools?" or "Should only solid research be published?" So..."Yes, we should move more from opinion-based clinical decisions to evidence-based decisions." But how do we do that? First, what evidence to we consider? Take research. Should the evidence be taken entirely from peer-reviewed research journals? Should those research studies include "old" studies (e.g., 20-30 years old) or should they be restricted to "recent" studies (e.g., within the past 5 years)? Should the evidence be considered only after it has been incorporated into mainstream practice (i.e., translational research findings as well as bench research findings)? Should the studies be restricted to phase 2 or 3 clinical trials (of which there are relatively few in stuttering treatment), or should they include careful case studies (from which, strictly speaking, one should not generalize)? It is obvious to me that there are no clear cut answers to any of these questions. Next, consider clinical opinion. Should an experienced clinician's past positive or negative results from a given therapy approach be used in clinical decisions? Should clinicians constantly change their approaches based on the most recent published or unpublished research? Should the desires, previous successes, or previous failures of the client be taken into account in therapy? If so, what should be done if some or many of these factors indicate that the best "evidence" perhaps should not be used? All this is to say that I believe we definitely should promote and personally participate in EBP. But I would say that good clinicians have always done that and always will. Some poor clinicians often do not keep up in their fields and therefore persist in strategies that might not be optimal for the clients. Other poor clinicians often jump on every bandwagon that comes along and apply strategies without considering the big picture. In short, I believe that EBP, if used by 3rd party reimbursers, by administrators, or by professional associations like a hammer will ultimately do as much damage as benefit to clients and the field. On the other hand, if EBP means keeping up as best as one can, using good judgment, keeping good records and using the results of those record, and being sensitive to the hundreds of intangible variable that are part and parcel of working with other human beings, then I'm all for it. Ken
From: Walt Manning
John, Ken St. Louis provided a comprehensive and reasonable response and I, for one, agree with what he said. For another great response see the article by Nan Ratner in the Journal of Fluency Disorders (Rather, N. B. (2005). Evidenced-based practice in stuttering: Some questions to consider. Journal of Fluency Disorders, 30(1), 163'188). For a somewhat different view see the article by Anne Bothe (Bothe, A. K. (2003). Evidence'based treatment of stuttering: V. The art of clinical practice and the future of clinical research. Journal of Fluency Disorders, 28(3), 247'258.) I have written about this issue over the years (Manning, 2006, 2010a,b & I'll send these to you if you are interested), and have come to the conclusion that while evidence for our clinical decisions is certainly necessary, evidence for any one particular therapeutic protocol also provides good evidence for other protocols that share common factors (parent involvement, experienced clinicians, effective therapeutic alliance, etc.). We need to be careful to appreciate the difference between treatments have been shown to be INvalidated and those that have been UNvalidated. We need to appreciate that the best evidence can come from the speaker and what they tell us about the effectiveness and value of the therapeutic experience.
From: Rosalee
Your question is an important one and I have been thinking about it for some time before responding. I think that one responsibility of the consumer organizations could be to help the PWS make a well informed decision about treatment. This would involve putting forward the scientific evidence that exists to support any treatment, and matching that with the clinician's expertise and client's objectives and expectations. Living in this era of internet and social networking, we are faced with an abundance of ideas about stuttering treatment, some of them probably good value and others perhaps rubbish. I think that the national organizations could take the lead in helping the PWS to sort through some of this information. I am not sure about the route to take in doing this but feel that this might be a good dialogue between the professional and the consumer.
From: John Kagie
Walt, Thanks for your answer and yes, I certainly would like to read your articles. Ken, Thank you for your answer that made the subject more clear for me.
Rosalee, thank you for your response. Some time ago our association started an initiative to collect information about the level of client satisfaction about speech therapy. Information is gathered with questionnaires that will be filled out by clients half a year and two years after the end of therapy. The Dutch organisations of stutter therapists and speech therapists, and the three major alternative therapy providers have agreed to cooperate. This 'research' will start within a couple of months, so we hope to have some useful information in a couple of years.
From: John Kagie
Recently we had a discussion with an organization that formulates the policy in the field of health insurance in the Netherlands. Their position is that speech devices such as DAF and AAF can not be considered for coverage by insurance since they "only correct the fluency of speech" and do not compensate for the speech problem itself. They base their view on the definition of stuttering in the International Classification of Functioning, Disability and Health of the WHO. What is your view or opinion on this subject? John Kagie, Netherlands stuttering association Demosthenes
From: Kevin Eldridge
John, I hadn't thought about categorizing speech devices as "only correct(ing) the fluency of speech), but I have thought about devices and insurance. On the one hand, in the US, most insurance policies would cover rental of crutches if someone broke their leg (which doesn't correct the problem) but most policies don't cover eyeglasses. You need a supplemental policy for that. To me the issue with covering DAF and AAF devices (like the SpeechEasy) is that the limited research done by independent labs suggests no real long term benefit. For this reason, I don't think they should be covered. I think that the "average" PWS would be better served with $3000 - 5000 worth of therapy than an expensive device. So, while they may help some people, it appears that devices doesn't help most. I'm a big proponent of using our health care dollars wisely (I'd actually rather see a government owned insurance program that put health care savings back into the system rather than in the pockets of shareholders and CEOs). I"m sure others will disagree with my thoughts on speech devices and health care :-)
From: [no name]
Ask them whether they would make the parallel argument to a hearing aid user. Namely "hearing aids can not be considered for coverage by insurance since they "only allow users to listen to speech" and do not compensate for the hearing problem itself.
From: Pam Mertz
I noticed that a previous poster asked question about what if the person who stutters is a doctor. What approach should the SLP take? . . . I am curious about the best approach when a pws attends to routine things like going to a doctor and getting the unsettling responses we often do, but you would hope that you wouldn't get from a medical professional. Two quick examples: recently, I was in a waiting room and the NP asked me, from a distance, what hospital I had had a certain test done. I replied, "Sa-sa-sa-sa" and then the rest of the word and she patronizingly smiled and said it can be confusing to remember names, huh? I was stuttering, not forgetting the name :) Just this week, I saw a doctor and she was talking about deep breathing strategies and I told her I was familiar, as, if she hadn't noticed, I stutter. She looked at me and smiled and said, "no, you don't, you have never stuttered with me. You only just did because you brought attention to it". I regretted saying something about stuttering at all, because then it seemed I should have further, but chose not to, as that's not why I was there, and quite frankly, it seemed obvious she didn't understand stuttering. What might I have done differently?
From: Lynne Shields
Pam, Well, such an experience is certainly an opportunity to education the physician or other professional who makes such a statement. Whether or not you would choose to do this might depend on the situation and the person. If you know this physician to be someone who is open to new information, it might be worth telling them that, while they may never have heard you stutter before, you certainly do know yourself to be someone who stutters; that stuttering is a variable disorder, that sometimes you are able to hide the stuttering (or whatever the case). I don't see a problem with your ignoring the statement, if you aren't up for educating, or if you know that the particular person will not really listen. I don't think you are obligated to educate someone about stuttering just because you happen to stutter. I think that your response might be best dictated by what you believe will allow you to feel successful in that situation. I'm all for laying the responsibility on the one who owns it! If the person is clearly being either obviously unthinking or even rude in some way, a simple "your response tells me that there is quite a bit about stuttering that you don't know" would not be unreasonable comeback. In the situation you described, you gave a reasonable response to clear up the doctor's misunderstanding. Dropping it is a reasonable response, so I don't think there is another way you SHOULD have handled it. There are certainly other options, as I suggested above, but I would hope that you'd feel no obligation to do other than you did. Best wishes on your next encounter :-) Lynne
From: Marybeth Allen
Hi Pam and Lynne, I agree with everything Lynne has said... we PWS will always meet with these types of "ignorant but well meaning" people and, like Lynne, I too think how we respond to anyone of them is dependent on many variables, most of which Lynne listed. Pam, does make it even more maddening that such a response came from a doctor , but as many fluency clinicians will tell you, the medical profession is one that needs a lot of educating about stuttering! In any event, I just thought I'd also add that I believe that no matter how a PWS responds to these types of situations in "heat of the moment", there can be value in the de-briefing that we do afterwards. Especially if you can share the experience with a supportive "other" who understands stuttering ( i.e. support groups, your SLP, family members). By talking about it with someone - we can re-frame it , look at it more objectively and become desensitized. You can brainstorm solutions with the other person and come up with a whole tool bag of possible ways to handle a similar situation. You'll be more ready for that next encounter and may have already decided on your plan of action if it happens again. Thanks for bringing up this topic Pam. Marybeth
From: Pat
I like the advice given already about sharing/venting. But would add that sending this doctor an info booklet, one of the commercial video tapes, a quick "Fact Sheet", a copy of a good chapter from a textbook etc are also important steps. If we don't give docs the recent, correct info... who will? Use your experience as an opportunity to help the doctor by providing GOOD, factual info. You will be helping all the other PWS this doctor comes in contact with in the future.
From: [no name]
Pam, My sense is maybe you shouldn't do anything differently next time. We all react in certain ways and often it is just best to move on and not overanalyze things. I think it seems reasonable not to go into detail with someone if you have determined the interest is not sufficient to make it successful. My sense is if you had more openness from the individual (doctor or whomever), you would likely have expanded on your reply.
From: Maria Grazia Peluso
Given the proposed role of abnormally high dopamine in the basal ganglia of individuals with fluency disorders, have there been any investigational trials testing the efficacy of dopamine receptor antagonists in treating stuttering?
From: Nathan Lavid
Hello Maria, There are a few trials with medications that block dopamine activity. These medications can be of some help, but are associated with adverse effects that do not lend to cavalier use. For example, Tourette syndrome is thought to have a similar pathology to stuttering as it relates to the brain processes involved. And, a dopamine antagonist, haloperidol is a FDA approved treatment ' though is rarely used secondary to its side effect profile.
From: Ari (Israel)
One of the biggest turn points of mine was when i saw the "Peter Ramig video" from SFA,he explain in this video how we create our blocks, and how we tense the speech system. It's explain what Wendell Johnson wrote many many years ago: stuttering is what we do in-order to not stutter. I want to ask is it a fact that we (the stutterers) are the creators of our tense speak?
From: Dale Williams
The WJ quote suggests that stuttering is voluntary, which I don't believe. But I do agree with Peter that most of the visible tension seen with stuttering is a learned response to the disfluency. For one thing, the breakdowns of incipient CWS don't typically include such tension.
From: Ari (Israel)
Sometimes the limit between the hardcore problem, and the reaction to it are no so clear. Did you agree that when the stutter knows that he is going to stutter ,the stuttering is the result of the fear (to stutter)? Thanks !
From: Dale Williams
I believe that past history of stuttering and the resulting word/situation fears make stuttering, if not predictable, at least less random.
From: Judy
I am an SLP and recently received this question from a parent: Tonight, my child is having a party with 3 friends and I have never heard her more dysfluent. It is so severe tonight, I actually had to go upstairs because I needed to remove myself from hearing distance. Her friends are great and they don't say anything to her. I called her upstairs and asked her if she heard her rocky speech and she said no. I know she is excited about her friends sleeping over, and she just doesn't know she is doing it. I need some coping methods for situations like this. Should I have asked her if she heard it, asked her to slow down, or completely ignore it? Without knowing the details of this case, are there any general suggestions that you can offer parents with questions like this? Thank you, Judy
From: Jean Sawyer
Hi Judy, I am glad that the parent has you to talk to about her feelings about her child's disfluency. I find it is helpful for parents to have an outlet for their feelings about their child's stuttering, and in my work with children who stutter, I build time in for the parent in every session. Counseling skills are helpful here, as by listening to and valuing the parent's feelings, you can guide the parent to coming to his or her own solutions. In this particular case, I might have said something like, "It must be so hard to hear your child be so disfluent." I would have also asked how the parent felt when he or she asked the child about it, and how the child reacted, in an attempt to help the parent come to his or her own strategy for coping with future times when the child becomes disfluent (e.g., calling attention to it, reminding the child to do techniques, or ignoring it). I would probably also point out that the parent is very perceptive that all the excitement made the child more disfluent, and that the friends are accepting of the stutter. There is a lot going on here because it involves the relationship between the parent and the child, and the parent's coping with stuttering. The parent obviously has a trusting relationship with you, as he or she was able to share this with you. Connecting with other parents of children who stutter in support groups such as Friends or NSA is another recommendation I can make. Good luck to you, Judy, in your work with this parent. Jean
From: Dick Mallard
Judy, you are asking the questions most parents ask relative of what to do. This is why I focus my treatment with the family to teach them what to do to handle situations just like you describe. My suggestion to you is to keep the lines of communication open with her. You did the right thing in asking her about her dysfluency. Also, I have no problem with you removing yourself from the situation due to difficulty in hearing her talk. You might ask her what she wants you to do when she is having a difficult time. You might explain that it is somewhat hard to listen to her when she is having more trouble than other times. People who stutter need to understand that communication involves a speaker and listener and sometimes it is hard for the listener to sit through the stuttering. You might also ask her what she thinks she might do to help you listen better when she is having a bad day. The idea here is to be open and honest with what you experience and how you react during her speech. Ask her how best to handle situations relative to her communication. You might be surprised at what she says and suggests! Be sure she understands you are talking about her talking only and not her as a person in general. There are so many more options here that I do not have time to explore. If you wish to continue this dialogue you can contact me at amallard@satx.rr.com. Best wishes to you and your daughter.
From: [no name]
Judy, A tough situation, certainly, for any parent. Given the information you shared, it seemed you handled it quite well....took some time out, asked an nonevaluative question, and then dropped it when she responded. There are so many variables involved in communication, and the excitement of this situation clearly was great for your daughter. Go with the excitement and fun....leave the speech practice for another time. Which is what you did!
From: Cindy
I have a 9 year old son who has not yet been formally diagnosed with a cluttering disorder but displays many of the characteristics. The school SLP is waiting for the classroom teacher to get to know him better before asking her to complete the cluttering questionnaire. He has seen a neuropsychologist who diagnosed him with a non-specific learning disability characterized by language based weakness. My first question is how is cluttering best diagnosed by a SLP? Are the questionnaires sufficient in making that judgment or is there some sort of testing? Also, the school views cluttering as a speech related disorder and our state sees speech therapy as a 'stand alone service'. Based on the current state guidelines, a child nine years of age and older is not eligible to receive stand alone services so they will not provide support for my son. Since cluttering is a more broad based disorder (effecting not just speech), can you give me some suggestions as to how to go about advocating for him?
From: Lisa LaSalle
Hi Cindy, You are asking well-researched questions and your son is lucky to have a mom who is advocating for him. It sounds like his SLP is collecting helpful info about your son's speech and language disorder from his classroom teacher, and that she is leaning towards a diagnosis of cluttering. A few key features of cluttering are: (1) fast-sounding arrhythmic or choppy speech rate, characterized by omitting the weak syllables in words (so 'saxophone' sounds like 'saffone' or 'telescope' becomes 'tescope'); (2) excessive repetitions of part-words, whole-words and phrases; (3) utterances that are not well-formulated; (4) lack of self-awareness of the speaker who clutters that there is a problem. You asked, 'how is cluttering best diagnosed by a SLP?' The answer is that there are a number of ways, and only a questionnaire of a classroom teacher would not be enough. Most SLPs like to get a case history from you, the parent. Here is where the diagnosis of the neuropsychologist in your son's case would be helpful, as the testing he or she did would be good for comparison purposes. There is a large co-occurrence of learning disabilities and cluttering. Then we would collect a representative spontaneous speech sample, assess the types of disfluencies occurring, and test speech and language areas through standardized (norms) or criterion-referenced (checklist-type measures). We would want to rule out a hearing loss, ask the child to say 'puh-tuh-kuh' as many times as he can, as fast as he can, which is called diadochokinetic speech rate and can be compared to norms for how rapidly and accurately can the speaker move their articulators?) I'm a little more concerned about my ability to adequately respond to your last set of Qs because I believe that he SHOULD get services, and I am not familiar with the current state guidelines that you refer to, where 'a child nine years of age and older is not eligible to receive stand alone services.' So are you saying that you were told by your son's school SLP that she would not be able to provide speech services for him, whether or not she diagnoses him with cluttering? Perhaps other professors who are familiar with this state guideline will weigh in. There are some great resources out there for SLPs who work with students who have the speech disorder known as cluttering, but that does not seem to be the problem if the SLP has claimed that due to state guidelines, she will not be able to work with him. Anyway, I hope my partial answer is a start for you. We all learn from the different problems and perspectives brought to this conference.
From: Lisa LaSalle
I just talked to my colleague, Angie Sterling-Orth, SLP who teaches school methods here at UW-Eau Claire. It is her opinion that your son could be qualified if the cluttering disorder is classified under stuttering and related fluency disorders and then as a Primary handicapping condition. Of course state eligibility guidelines vary, but this would allow him to receive services. Many times we as SLPs need to make the diagnosis and classify the diagnosis as a disorder that is educationally handicapping. For example, untreated cluttering prevents a child your son's age - probably a 4th grader? on writing assignments, to do present oral reports successfully, etc. Good luck! And again I invite the opinions of others who have had more expereince with qualifying a child for speech services, either speech-related or stand-alone.
From: Tim
ok in brief, last night i went out with some mates to a bar in northern England, and i noticed a cute girl at the bar ordering a shot, so i took interest and had a drink with her. While she was talking i immediately picked up a hint of a stammer, not at first being sure i let the conversation continue thinking shall i mention it? i mean i don't know how cool she is with it, or if she even sees what she is doing as stammering.. or is she just drunk? While this thought process continued i then noticed a clear block, with a secondary eye blink and switch of word. so, i went for it "by any chance do u stutter a little?" i said hesitantly, but fluently (i was drunk ;)... she smiled and said yes, i then disclosed that i did when i wasn't drinking quite so much jaegarmeister. We then had a heart to heart on stuttering in the middle of this club, and she said how she was more severe when she was younger but through acceptance, and confidence did not let the stuttering affect her, and she now runs a start up company along with her business studies. The point of the story is i had been feeling particularly frustrated and low in confidence, and this real life success story was just the tonic i needed. SO regardless of therapy and relapses...sometimes life decides to intervene and teach you a lesson. peace out Tim
From: Lisa LaSalle
Cool story, Tim! It makes me wonder, what do you think it means that 'through acceptance and confidence' a person cannot allow stuttering to negatively affect the way a person leads his or her life -- starting a business regardless of the speaking demands, etc.? In other words, if we battle with a human condition, like stuttering, and it doesn't go away, so then we stop battling and start living, it stands to reason that the condition no longer affects us in the way it used to. There are parts of any human condition that are frankly hard to accept and it is hard to gain confidence in the area (e.g., talking or walking) that the condition affects. I'm asking because it is refreshing as a speech-language pathologist to run across these real-life success stories, because sometimes a client who stutters will tell us and show us that he or she has accepted stuttering, but still wants help to gain confidence in some aspect of their speaking life. Then again, SLPs don't see people who stutter who have truly accepted all aspects of their stuttering ' they never seek us out.
From: Tim
Hi Lisa, thanks for replying! Personally i interpreted her 'acceptance and confidence' in speaking due to the fact she had a very solution focused, and strengths based approach. From the out set it was clear her focus was on her career and goals, rather than improving or changing her speech. The increased confidence in speech was a by product. She stuttered with clear interruptions, but as the listener i did not feel an emotional response, such as sympathy for her, but instead felt that she was in control, and this was a nice feeling. Its interesting you say you do not see these people as clearly they choose not to focus on 'fixing' the stuttering, but instead on other more productive tasks. I am applying this more to my life, and feel that skills in concentration of focus and emotional control play a big part. Thanks again
From: Kevin Eldridge
Tim, What a cool story! Thanks for sharing it with us. I was lucky enough to be in London with a mate for 1 month the summer before last. We visited different pubs every night. I miss the pubs in England! I really miss the pubs! — OK TIM... I gotta know. Did you ask this girl out?
From: Martina Costello M.S. CCC-SLP
I am creating a fluency competency for our hospital's rehab department at our children's hospital. I am looking for a straightforward, comprehensive test I can use for preschoolers who stutter. I have been using Richard Shine's systematic Training for Young Children Assessment tool. Unfortunately, it is currently out of print and I am running out of protocol sheets. What I like so much about Shine's test is that he has a list of questions for parents and then a very straightforward test system. There are several SLP's in our system who don't have a lot of experience with dysfluency, and I felt this test would be good for them as well. I would appreciate any input or resources you may have.
From: Nan Bernstein Ratner
There are a number of devices (I wouldn't necessarily call them tests) for this age group. There is a weighted formula (tough to post in this format) developed by Yairi and Ambrose that roughly penalizes blocks and prolongations more than repetitions and factors the number of iterations (number of times something is repeated) to get a numerical score. This score CAN then be compared to a normative base of typical preschool fluency values to justify that someone is outside the normal range for behaviors characterizing stuttering, rather than normal disfluency. Preschoolers can also have affective and cognitive responses to speaking and stuttering that justify both treatment and specific treatment goals. The CAT by Brutten & De Nil is a classic, standardized measure for this, which has recently been adapted downwards for much younger children in preschool, by Gene Brutten and Martine VanRyckeghem (called the KiddyCAT). It is included in their comprehensive program for stuttering assessment and treatment, the BAB (Behavioral Assessment Battery). There are other options, but this is a start. I personally feel it is critical to use normed devices to justify coverage of services by insurers, placement on the caseload in terms of qualifying clients, etc. Nan
From: Emma Lowe
Hello! I recently heard that research shows that when people who do not stutter have a dysfluency in their speech, they disregard it and often it goes unnoticed. On the other hand, when people who stutter have an exceptionally fluent period, they disregard the fluency of their speech believing that it is abnormal for them. A fluency diary was suggested to assist people who stutter with documentation of fluent periods so these periods can be acknowledged and rewarded. I was wondering if anyone feels that this is true of their fluency, and if you have ever tried keeping a diary, and if it helped. Thanks!
From: Walt Manning
Emma, Of course I don't know what research you recently read but the work of Anthony DiLollo (2002, 2003, 2007) includes descriptions of how individuals are able to reconstruct how they see themselves as a fluent speaker using narrative techniques based on Personal Construct Psychology. If you email me I will provide his address so that you can contact him. I'm sure he would be happy to send you some reprints. Writing a diary or journal is one of several ways one can re-write their story. Of course, some systematic approach for changing the behavioral aspects of stuttering (and fluency) is usually necessary. Still, a reconstruction of the how the person sees themselves and their ability to do something about stuttering is usually necessary for long-term change.
From: Kevin Eldridge
Emma, I think you hit on a very important point. Why is it that every time a PWS stutters they accept it as normal and real, but when they are fluent they view it as an exception. The reality is that exceptions are not really unique events, they happen all the time. It seems that PWS are more willing to take ownership of the stuttering they do, and not the fluent episodes of speech. I was guilt of this for years myself. But the reality was that the "exceptions" (i.e. when I produced fluent speech) were as real as the stuttering. Once one realizes this, they can "own" the exceptions as well. It seems that keeping a diary might help the PWS realized that what they thought were random exceptions, were not so exceptional after all.
From: Ari (Israel)
For me the most important issue is ,if i can trust my speech, even if it's works great in most cases, but if sometime i can't talk, it is hard to me to be calm, cause i am using unstable system. That's why for me it was very important to have tools, to deal the moments my speech crash.
From: Jim
Is the Deaf culture and Deaf community a good model for people who stutter and the stuttering community. There is a growing stuttering culture. For example, I stutter, there is nothing wrong with me and I don't need treatment. Is it appropriate? What do you think? Should stuttering be eradicated or be accepted? Should Stuttering be treated like cancer, as Yairi suggested years ago.
From: sachin (TISA)
My opinion is: both a community and therapists are needed; But both should give up this huge obsession with curing, managing, helping to speak better or differently- all that is often driven by big money and a notion of outer perfection (everyone must look talk walk like this..the narrow range of "normalcy"). Let there be some space for Acceptance. I do not mean to say that people should not work on their communication skills. But there should be no pressure on them to spend lot of money and keep trying one program after another for the best part of their life, ignoring other gifts of life in the process. Two years back, in this very forum there was a very good article on Transfluency (by Loriente). I think that line of thought is and will be relevant for a long long time to come..
From: NAME
PARAGRAPH
From: Danielle C
I'm currently in my Graduate Program for Speech Pathology and try to get a better grasp on thoughts and feelings of PWS. I was reading a paper on the conference website called the 'The debilitating D word.' By Grant Meredith and the following question was triggered' I've taken two stuttering classes and cannot recall my professors ever referring to a PWS as a person having the 'D word' (disability). I was wondering if a majority of PWS would agree with their stutter as a disability or if they look at the word as being offensive. I know that in the Deaf culture, saying that someone who is deaf has a disability can cause a huge up roar. I feel that a better word for the 'D word' would be difficulty rather than disability. How do PWS, or individuals that work with PWS feel about it?
From: Kevin Eldridge
Danielle, You pose and interesting question. By definition, a disability is a condition caused by accident, trauma, genetics or disease which may limit a person's mobility, hearing, vision, speech or mental function. So a person who stutters, like me, has a disability. I don't find that statement offensive. However, am I handicapped. That is a different question. I would venture to say that some people who stutter are handicapped by the disorder while others are not.
From: Ken Logan
I'd agree with the points that Kevin made. People who stutter usually will have "dis-ability" in speech fluency while performing daily activities (for some people, the "dis-ability" will be apparent in only a handful of activities, and for others it will be apparent in many activities). One can also have "dis-ability" in participation (e.g., not saying as much as one would like to say, not speaking in as many situations as one would like to speak in). These "dis-abilities" (I'm using the hyphen here to signify a relative lack of ability or skill!) are usually the things that make a person seek out the services of an SLP. So, that's one way to think about it. There is also, though, the broader concept of "having a disability". Sometimes, clients can have a very difficult time coming to terms with this. (It's a little like the episode of Seinfeld, when Jerry is duped into wearing the puffy pirate shirt on national TV. Kramer tells him, it's no big thing, the pirate look is going to be the next big thing. And Jerry answers in a helpless way, "But I don't want to be a pirate!"). It's not uncommon for people who stutter to want to keep stuttering (the disability) at arms length (or further). Coming to terms with disability,in this case one that affects speech fluency, can be a very long and painful process for some people, and it's important for clinicians to be sensitive to "where the client is" in this process. I'm not sure if it's necessary for a client to be 100% comfortable with the concept of "having a disability" to make significant progress in therapy, but I think the more comfort one has, the more one will be able to view the challenges they face in an objective way. Great question! I'd be interested to hear others' thought about this.
From: Tom
Hi, I was wondering what is the difference between stuttering and cluttering? Are the causes different and is it possible for a person to suffer from stuttering and cluttering at the same time. At approximately what age does a child develop cluttering?
From: Ken St. Louis
Hi Tom, Yours is a very frequently asked question. I suggest you take a look at the online conference on cluttering last April. Here is the link:
From: Pam Mertz
I know I post a lot here (!), but its a great way to get different perspectives. I don't really write a list up all year and save it for October, even though it may seem that way! . . . . I recently had a guest on my podcast, a woman who stutters who is also a SLP from another country. She responded to a question by discussing concomitant behaviors. One thing she mentioned, which I have never heard anyone else say before, is that she is unable to smile while speaking publicly and stuttering. That struck such a chord with me. I am in Toastmasters and speak frequently (about stuttering when I can get away with it!), and I often have received feedback from fellow members that I should try to smile more. I never paid much attention to this until I saw it mentioned as related to stuttering. When I speak, I do find it hard to relax right away, and I think some of it does come from worrying how much stuttering will show up. I have had some of my speeches recorded and I do notice that I often look tense and rarely smile. Sometimes I will force myself to smile if I happen to think of it, but it looks forced. Has anyone ever heard of this? Thoughts?
From: Jennifer Kleinow
Even though I don't have an "answer" to this, I did think it was an interesting question! One thing to think about--emotional smiling and voluntary/forced smiling are controlled by different cortical brain areas. Here's one link that may prove interesting: http://www.neurology.org/cgi/content/abstract/66/6/887?ijkey=dcea31a6f86c6cf32c52fb740c7a97d93159e2bf&keytype2=tf_ipsecsha Think about how often we've tried to smile for a camera, and how awkward it sometimes looks. That's because we're using the voluntary muscle pathway instead of the emotional one. Even though I don't stutter, I had considerable difficulty with public speaking when I first started teaching. Some of the best advice anyone ever gave me was to "fall in love with the message", to really enjoy your topic. I found that the more I cared about my message, the less I cared about the delivery. I stopped noticing my own voice and breathing patterns that had distressed me so much before. Plus, the more I got into my topic, the more likely I was to smile out of mere enthusiasm. I also genuinely wanted to connect with the audience, no matter what I sounded like. It took me awhile, but now I'm even able to see subtle bits of humor in some the most serious topics, which actually does make me smile (the real kind) here and there. Jennifer
From: Barbara Amster
Pam, interesting question. I really don't think that smiling or not smiling has much to do with stuttering. Much of what everyone does when we talk is quite habitual and we don't really think about it. All of us (people who stutter and those who do not) have mannerisms when we speak and I think that smiling may be one of them. I am sure that you know many people who smile a lot while talking. We also know others who don't smile and may look angry even if they are not. I know that when I have been in social situations where I was required to smile, it also felt forced and the smiling did not make me feel relaxed.
From: Judy Kuster
The answers you received are good ones, and I'm also not familiar with the LACK of smiling as it relates to stuttering. I am familiar with the opposite, however - using smiling and a little chuckle as an avoidance behavior or a distraction to deflect attention away from the stutter. There is a beautiful example of this in Sheehan's film on Stuttering. The very attractive young woman who stutters is describing her "ideal man." Interesting fact is that many years after that film was made, I met that woman. She had become a speech-language pathologist! Judy
From: Ken Logan
This is an interesting question. My first reaction is that a speaker who is not "at peace" with his her stuttering will indeed probably find it very difficult to smile much while in a speaking role. That is, if one is focused on issues like "I wonder what the listener is thinking about me right now?" or is making negative self-evaluations internally when stuttering (e.g., "C'mon man, you can talk better than that!), then it probably would be difficult to smile in any authentic way. Now, a little anecdote: I worked with a person many years back who told me that he found it easier to talk fluently if he smiled while talking. And, he did, in fact, break out into a big smile periodically, and sort of kept a "background smile" on his face at other times. I'm not sure whether it truly did help fluency that much, but I remember noticing that the big smiles usually coincided with pauses, and sometimes people find that fluency improves when they increase pause frequency.
From: Shayanne Roth
I was wondering how an SLP would keep a client motivated during their therapy sessions. I'm a student in the Communication Disorders field. In class, we have been learning about the different aspects involved in therapy and that the client's personal motivation plays a key part. Regardless of the therapy, a clinician should keep things interesting for the client. But because stuttering is a different situation, how does the clinician keep a PWS from getting discouraged and giving up?
From: Ken St. Louis
Dear Shayanne, You ask a difficult question, and probably one that cannot be answered in a generic sense. Motivation is very much an individual thing. We often talk of motivation as if it is a quantity, e.g., "My client needs more motivation." In my view, it is best though of as the complex interaction of cost versus benefit. What is the client gaining in terms of benefit given the amount it "costs" him or her in term of time, money, effort, courage, pleasing parents or friends, etc.? If the benefit exceeds the cost, the client will be "motivated." Therefore, the answer to your question, "How can we keep our clients motivated?" is to reduce the costs or increase the benefits of therapy, or both. Importantly, that may or may not be possible. If a client really does not care about being fluent, then it is likely that no amount of "interesting" materials, dog an pony shows, etc. will make the difference. Some clinicians fall into the trap of making the benefits of simply coming to therapy the end in itself. In such cases, therapy might be great fun, but it may have little real lasting benefit in terms of understanding, dealing with, or reducing stuttering. Is it any wonder that these clients either make little progress or relapse? I believe we should make therapy as interesting and enjoyable as possible, but stuttering is sometimes very painful, and therapy must deal with that too. If your future clients eventually find that the benefits from your treatment are "worth it" to them, don't worry, they will be motivated. Best wishes in your studies. Ken
From: Walt Manning
Shayanne, Often the client's motivation has to do with the timing of therapy - when and how the lives of the speaker and the clinician intersect. It's not unusual for people to be motivated for change at periods of their lives when they are in a process of changing to another stage, completing school, changing jobs or careers, & moving to another city. Motivation is also related to the speaker's "stage of change" as described by Prochaska (1992) and his colleagues (pre-contemplation, contemplation, preparation, action, etc.). I've often noticed that people in their early 20's are often "ripe" (as Van Riper used to say) for change. Still, as you suggest, the clinician plays a part in motivating the client. Having a clear sense of direction and an underlying rational about the meaning and process of therapy is important and how this is communicated to the client is critical. A belief in the client's ability to succeed - if you really believe that is the case - is important. We can instill motivation to some degree but the speaker must have (or attain) the grit and persistence that is necessary to run the race. If we run along with him or her and show that we are willing to do whatever we ask of the other person (rather than just telling them what to do) the client is more likely to be motivated. This is another way of saying what the literature is showing - that the therapeutic alliance is critical for success in many forms of therapy.
From: Ken Logan
I agree with everything that Ken and Walt said, and just will add that stuttering therapy is, in some ways, not too different from what's involved with some other activities that involve long-term goals (e.g., weight loss, fitness training). There are highs and lows, and it really helps to have someone there (a clinician) to guide you, push you, encourage you, challenge you, hold you accountable, etc..., and it also helps to have access to other people who are dealing with similar changes. Support groups, internet discussion groups, and so forth can provide an individual client with a support network that helps him or her keep pushing at those times when it would be easier to just quit! And sometimes people may quit...but that doesn't necessarily mean that they quit forever. I can think of several people who returned (voluntarily!) to the therapy process after taking some "time off" and at that point, really made very significant strides toward reaching their goals.
From: Ken St. Louis
I'll chime in again here. Ken (Logan), I have been doing something for several years in my advanced stuttering class. On the first day of class (or near the first) I ask everyone to set for themselves a nontrivial personal self-improvement goal for the semester. Everyone is asked to state their goal out loud to the class. Then, near the end of the semester on the day I talk about transfer and maintenance, I ask everyone to tell the extent to which they met their goal followed by why or why not. The same issues that we deal with in therapy inevitably come up. Some examples: (1) can't remember the goal (2) goal was too broad with no good way to determine whether the goal was met or not (3) got too busy (4) other priorities simply took over (5) lost interest (6) goal was too hard (7) goal was not too hard but the person could not do it on his/her own (i.e., needed a coach) (8) goal was so trivial (e.g., "I'll take a walk in the Arboretum before the semester is over.") that it made no difference in the person's life (9) discovered that the goal was really not the right goal (10) the person discovered that the costs of the goal really outweighed the benefits, etc. Ken (St. Louis)
From: Kevin Eldridge
Shayanne, As Ken, Walt, and Ken stated, there are definitely things that we (and you someday) can do to help motivate our clients. They alluded to the fact however,that the client must be motivated as well. I just want to stress this point. I don't think it matters how good or motivating I am, if the client is not motivated to change (which is not an easy thing) there is no reason to work with them. If I begin to work with someone who says he is motivated but doesn't act like it, I reserve the right to remove myself from the clinical relationship until such time as he or she is truly ready to address change. We can only help someone who is ready to help themselves.
From: Gary J. Rentschler
I think this is a very important question Shayanne. I've found that I need to get to know each client very, very well to understand each person's needs and wants. I believe with adults who stutter that the key to motivating them is to tailor their treatment sessions and activities in therapy toward what the client is seeking from therapy. For example, if a client is having difficulty getting a job, I would orient a majority of therapy activities toward mock interviews, making conversation, and ways to talk about the client's stuttering in a job search. Good clinicians understand that clients want to improve their stuttering in order to accomplish specific goals in life. I think that's where SLPs need to look for motivation in therapy.
From: Sheree Reese
I find that those clients who are actively involved in setting the therapy goals remain the most motivated.
From: [no name]
Shayanne, I often try to put the stuttering therapy into perspective for the client...practice over a long period of time and don't expect or react too much to the ups and downs of the process. Of course, having the tasks relevant also helps. Allow some variability in scheduling so you can decrease frequency of sessions yet still maintain contact when the client is preoccupied or needs a little less contact time. Also, sometimes helps to back off on the complexity of tasks and just reinforce fluency during times when the client is discouraged.
From: [no name]
I have taken two classes about stuttering and I have learned that trust is an important bond between client (who stutters) and clinician. Since the PWS is already in a vulnerable place, what is the best way to build rapport with your client?
From: Lisa LaSalle
Listening, in one word. One of my favorite quotes about counseling in our field is "People don't care what you know until they know that you care." Caring comes through understanding. Understanding comes through listening. So listening and learning and basic caring (unconditional regard ala Ken Moses' work) are the first steps towards establishing rapport and trust. Dr. David Luterman, professor emeritus, has provided many good resources for us as clinicians entering into this trust relationship with clients. I also firmly believe that unsolicited advice "falls on deaf ears," so we really need to listen to the client and client family members to allow them to explore and describe the problem. Only then can we guide them towards giving their own advice, based on the skills and techniques and evidence-based practice that we provide. I learned this through both experience and my reading of Luterman's work. There are many other great resources out there, too, on counseling in our profession (e.g., Bloom & Cooperman, Flasher & Fogle, Roseberry-McKibbin), which is the bigger picture of "establishing rapport" and trust. Good question!
From: Retz
"I've never seen a person who stutters, at any age, get any worse because of therapy."
From: Lynne Shields
Hi, Mike! The first thought that crossed my mind when I read the quote is another quote, "never say never". I can't think of a client in our clinic whom I know to have worsened as a result of therapy, but that does not mean that it hasn't happened. I can think of cases where I'm not sure there was any measurable benefit to the client, for a variety of reasons. I would hope that as professionals we seek to do no harm to any client presenting with any disorder of speech or language. All the best, Lynne
From: Retz
In speaking with a friend who is following the ISAD, he said to me after my posting: "Thoughts on this statement?" thread, "What are you, Retz? NUTS? Have you gone to the Dark Side? Do you actually believe the statement you posted?" So, I guess I need to make myself clear about why I posted the statement "I HAVE NEVER SEEN A PERSON WHO STUTTERS,AT ANY AGE,GET ANY WORSE BECAUSE OF THERAPY." I read this quote given by a professional expert in a newspaper article, and have heard many different professional experts share/imply this idea with others at various conferences. I ABSOLUTELY have found that statement to be false, and disagree with it totally. As a person who stutters, my personal experience receiving therapy in which the therapists delivered therapies emphasizing fluency training techniques, stuttering modification techniques & DAF to 1.) increase the severity of my stuttering (what one would see and hear when I attempted to talk),2.) seriously deepening the "below the iceberg" aspects of the disorder of stuttering and 3.) dramatically increase the fear of talking AND the fear of stuttering. These types of therapies and the way in which they delivered led me to chose what I believe to be the ultimate stuttering behavior of silence. As well, in my professional experience listening to parents of CWS, CWS, and adults who stutter many have shared very similar therapy experiences. It is my belief that some therapies - despite the therapists intention - that seriously risk and increase the probability of making a person who stutters worse. In posing my question regarding this "statement", I am wondering if the professors and experts participating in this ISAD conference would share their thoughts regarding the statement "I have never seen a person who stutters, at any age, get any worse because of therapy."
From: Annie J
Growing up, I never encountered anyone who stuttered. What would be the best way for a teacher to react to a student who stutters? I know the bulk of the speech falls upon the SLP, but they cannot be with us at all times! What are the best approaches a teacher can use?
From: Ken St. Louis
Dear Annie, Let me suggest a simply way to listen to a person who stutters. Listen "past" the stuttering as if it weren't there and enjoy the conversation. Stay engaged, be as animated as the situation calls for, keep normal eye contact, etc. just as if the person were not stuttering. It's not always easy, but with practice, it gets easier and easier. If the person brings up the stuttering, then enjoy the conversation about that as well. Ken
From: Ken Logan
Another good thing to do is to "spend time with people who stutter." You may not personally know many (or any!) people who stutter, but there are many video resources available these days that allow you to, in a sense, "hang out with" people who stutter. One good example is the "Transcending Stuttering" video, which I believe is currently available on YouTube. It has vignettes from several people who stutter, and traces changes in their stuttering at different point in life. Although not everyone talks specifically about what they'd like listener's to do, there is enough information there to get a good sense of the things that help and the things that don't. There are lots of great written and video posts at this website, as well. I think what you'll see is that although there are some general "good practices" (see Ken St. Louis' post above), there also are individual differences. Another suggestion is to simply ask the person (e.g., Does it help when I ___ or would you rather than I just ___.).
From: Em M
I understand that when someone stutters there may be tension in the larynx and this causes the person to have a problem phonating. I am wondering if having the person mouth the word without phonation will help them relax enough to allow phonation? My reasoning behind this is that I wonder if mouthing the word silently will help the person take their mind off of the stutter/block and in turn, take the fear out of word that they are having trouble producing and allow them to relax the larynx to produce sound. Thanks for your help.
From: Lynne Shields
Em, I have known of a few people who stutter who have tried such a tactic. Other than possibly serving as a distractor devise, I'm not sure how it would truly have an impact on laryngeal tension, since the mouthing relates to movements of muscles in the oral cavity rather than the larynx. I have seen at least one person for whom this tactic ended up becoming a part of their struggle behaviors, and so turned out to add to their problem. That would be a concern for me in working with a client. Others may have a different take on this, but those are some points to consider. Thanks for your question. Regards, Lynne
From: Kevin Eldridge
Em, It's an interesting thought, but I'm going to agree with Lynne on this one. People who stutter do enough weird things (I know I did) without adding something else to their repertoire. My guess it that this might help for a short time as a distractor. Eventually it will cease to work, but may become part of the persons speaking pattern. Now they are mouthing words before they stutter. Even it would help though, one would have to ask if this is a good strategy. We'd be replacing one weird behavior with another. When I was growing up, I often used an English accent at a drive through. When friends were in the car, I used more of a Monty Python dialect so that they thought I was being funny. I did this because I knew it was weird. This is also why though I knew I wouldn't stutter if I used an accent, I didn't do it with people who knew me. They'd wonder what I was doing.
From: Ken Logan
Em, I agree with all that Kevin and Lynne said, but just wanted to add one more point. I think your question gets at whether rehearsal of a motor plan can facilitate fluency, and for that question the answer is a qualified "yes"...That is, I think the rehearsal works best when the target utterance is spoken aloud. (As you may know, this has been called the adaptation effect.) Unfortunately, the benefits of such practice usually aren't long lasting. For example, if in a therapy setting a clinician asked me to say my name and I stuttered while saying it the first time, I could (usually) get to saying it fluently simply by repeating my name over and over and over. So, by the 10th time, I may say my name smoothly and with no impending sense of "getting stuck." If, however, the clinician asks me to say my name again 30 minutes later, it's very likely that I'd be right back to stuttering.
From: Devon
Can you make an adult or a child become a stutterer? If we know how to create stuttering, then perhaps we will learn better how to eliminate stuttering or treat it.
From: Ari (Israel)
Dr Wendell Johnson tried to prove that stuttering is a learn behaviour,so he did a study that was called later "the monster study" What was the results?the assumption is that the study failed and it didn't succeed to "make stutterers", although some kids from the study developed fears to speak but not stuttering. I will glad if one of the experts will expand the subject more. link to explanation of the monster study:http://en.wikipedia.org/wiki/The_Monster_Study
From: Nan Bernstein Ratner
Ehud Yairi has a long article on this topic in one of the ASHA journals - I will try to find details. But I wrote a similar piece in 2001 for an ASHA Special Interest Division Perspectives issue - you can find it at http://www.mnsu.edu/comdis/kuster/ratner2001.pdf right here at Judy Kuster's lovely website! best regards, Nan
From: Kevin Eldridge
After the study by Mary Tudor hit the newspapers, I re-read the copy that I had of the study and sent an analysis to a number of colleagues. At that point, I felt that the data did not show that Mary Tudor (and her advisor Wendahl Johnson) had succeeded in turning the orphans into children who stutter. I agreed that some had become hesitant to speak but didn't feel it meant the definition of stuttering. I also saw other methodological problems with the study. Since that time however, I have had the opportunity to speak to someone at length who has actually spoken to Mary Tudor and had access to records of her attempts to "undo" what they had done to these children. As a friend stated, "The study isn't the entire picture. Its what happened after that study that is really important." I didn't have access to that information when I went on the record saying I didn't believe the orphans stuttered. It appears quite clear from the interviews with Mary and the family of the orphans, that the study carried out on these children accomplished its goals. The children were hesitant to speak, reported difficulty initiating speech, and saw themselves as someone who stutters. The psychological damage was done. These kids believed what they were told- that they stuttered. The fact that the family of six of the orphans received almost 1 million dollars, suggests that the families had a strong case. On top of this, Mary could do nothing to reverse these effects. I don't feel it furthers our field to deny this. Devon, that being said, I am not arguing that because they were able to make children stutter, that this means we now know what causes stuttering. If I gathered 6 children for a study, and pushed them down every time they walked near me, they may begin to fall as soon as they saw me approach (to avoid being pushed down). Would this tell me anything about why some kids fall more than others? I've probably already said more than I should.... so I will stop.
From: Ari (Israel)
Thank you for your comments on the monster study. For me this study told me how the fear can destroyed our automatic speech. I have a lot of arguments with professionals (that don't stutter) and stutterers, about the importance of confidence to speak. Yes there are professionals that don't recognize the fear that we have when we are speaking,they just look of the amount of stuttering.
From: [no name]
But can you cause or induce stuttering in adults (of course you have to provide complete cure and treatment after you successfully induce stuttering in the adult person and get him/she back to normal). The monster study was on children.
From: Nan Bernstein Ratner
Such a design would not pass Human Subjects Protection in any country that I know (most have signed an international agreement). Since we do not know what causes stuttering or how to cure it without fail, any proposal to induce it without a guarantee that it could be "undone" would violate the dictum that human subjects research cannot do harm. For the non-researchers out there, fear over human subjects abuse has risen to the standard that if I even try to record a child who stutters telling a story to look at patterns of disfluency (e.g., as in a bilingual using two languages), it is not considered exempt from review, and I am not allowed to say that it cannot cause harm, only that the potential risks are those associated with every day life. We put up with such "craziness" because, unfortunately not everyone sees human rights in the same way, as the recent flap over studies of venereal disease in Central America shows. This is, in fact, why the study being discussed is called the Monster Study. Even at the time, it crossed a line. That is why it is now covered more in ethics books than in discussions about the cause of stuttering. Nan
From: Erin Dyer
It's interesting that when I have my graduate students go into the real world and pseudo stutter with different levels of tension and secondary features, so many will comment later in the course that they've started to "stutter". It appears that by paying attention to their own Normal Speech Mistakes, they experience a higher level of awareness which increases the possibility of tension entering their own speech. So what happens? They perceive themselves as stuttering. So cognitively, the students appear to be diagnosing themselves. I then explain how increased awareness of such behaviors can result in tension. It reminds me of when I tried to take dance lessons. I tightened up so much that I'd fall over myself. Am I saying that my activity caused my students to stutter? No, but those who are highly sensitive may have an increased awareness of their own response that it may also increase their own disfluencies. Of course, I do not have data to support this.
From: Ari (Israel)
A friend of mine that treat stuttering, told me that he think that the importance of fear in stuttering is just a nonsense. And that Van Riper and others texts about the fear are ridicules. For me the fear and the reaction to it,is the difference between mild problem and the monster that we deal with.
From: Nan Bernstein Ratner
I respect these , Kevin, but in the course of the legal case that the orphans brought against the State of Iowa a few years ago, many "experts" in our field viewed video depositions of the orphans as adults. Some did seem to have speech anxiety or hesitation. None would be called a stutterer. The settlement was reached in response to human subjects violations, rather than actual documented harm to their speech. I think the message should be that this was a badly designed and even more unethical study by any standards. Can you provide feedback to someone to make them speak "hesitantly" and without confidence? Create social anxiety? Yes - I probably could do it if I incessently teased a child about having ugly front teeth, as well. But you won't get stuttering as we know it, and that is what I think the question is directed at. Nan
From: Ken Logan
I'd agree with the others...I don't think one can make another person who is otherwise not predisposed to stuttering, develop the speech disorder that we call "stuttering." I have noted, however, that normally fluent speakers do sometimes produce isolated instabilities in speech movements that look very much like stuttering. Let me explain...in my graduate stuttering class, I have students practice the various fluency management skills that are commonly used in treatment. I've noticed that when some student clinicians are first attempting, for example, to produce a consonant using slow, gentle onset, they may exhibit brief tremor, very mild "blocking" and so forth. Is this "stuttering" in the same sense that a person who stutters experiences stuttering? Probably not. But it has some similarities. The students' disfluent speech patterns resolve quickly, after they gain more experience with producing the movements (so no one is becoming a "person who stutters"!). But, in some normally fluent speakers, there are some stutter-like patterns when the articulatory movements are at that stage where they requires lots of conscious monitoring and deliberate control to produce.
From: Jim
My question is: how do you treat disfluencies from normal adults (or is that a subconscious nervous reaction)??? Because the general public associate disfluencies = stuttering. The person stutters... So normal people who are disfluent are called stuttering, and a child who stutters is also stuttering.......... And....adults who stutter have normal disfluencies as well, in addition to stuttering/dysfluencies, shouldn't disfluencies from stuttering adults also be treated? What do the experts think?
From: Kevin Eldridge
Jim, Normal disfluencies, are just that NORMAL, whether in a person who doesn't stutter or a person who stutters. I would not treat normal disfluencies in a person who stutters, in fact... I try very hard to help my clients realize that being disfluent to a certain degree is perfectly normal.
From: Barbara Amster
A 'normal' disfluency that I have treated is to reduce the number of 'likes' or 'you knows' that people interject into their speech and which can be very distracting. A very important step in this process is helping the individual become aware of when they do it. I also believe that awareness is also a very important step in working with someone who stutters. They need to know exactly what happens at the moment of stuttering and what they are doing, thinking, and feeling.
From: Pam
Barbara, You wrote: "They need to know exactly what happens at the moment of stuttering and what they are doing, thinking, and feeling." How do you do that with someone who is fluent in the clinic room?
From: Barbara Amster
If you are trying to help a person reduce the amount of interjections such as 'like' or 'you know' there are many possibilities. Videotaping a person speaking and reviewing the tape with them can be helpful. Having the individual pay attention to when other people do the same type of interjection could be helpful. Signaling to the individual in some way such as by tapping on a table or raising your hand when they do it and eventually having the person notice when they do it in their own speech can also be helpful. I would only attempt to help someone reduce these types of behaviors because they are trying to enhance their speaking style for professional reasons. Do you remember when Carolyn Kennedy was running for governor of NY and she received much negative publicity because her speech contained so many interjections of this type? She may have benefited from this type of intervention.
From: Pam
Thanks Barbara. I was referring more to what you said about how you would use that same awareness with a person who stutters. My conundrum has always been that when I did attend therapy, briefly, I almost never stuttered in the room with the clinician. So how would one get me to be aware of what I am doing, thinking or feeling during a stuttering moment?
From: Barbara Amster
Pam, many people experience the same phenomenon when they enter therapy. Their stuttering reduces in the therapy room. Many think that the reason for this is that when you are in therapy, you no longer have to hide your stuttering and paradoxically it appears to reduce. Obviously, it's hard to study your stuttering when it doesn't happen. Perhaps you can become more aware of your stuttering on your own. A good guide for how to do this can be found in Starkweather CW, Givens-Ackerman CR, Stuttering. Austin, TX: Pro-Ed, 1997, which I believe I found on amazon.com for about a dollar recently. Their intervention based on 'awareness, acceptance and change is very helpful.
From: Marybeth Allen
Hi Pam, Barbara is right, this happens very often in therapy. The way I approach it is to do my best to "make" my client stutter in therapy. I look to the "speech ladder" we typically make that lists my clients difficult situations in order of difficulty. Then, taking elements from the top rung, I just try to add stresses, etc. to a speaking task to elicit stuttering. For instance ... bringing in the cell phone and making phone calls often does it!! Also I can "play" a rude, interruptive listener pretty well! Of course, I my client knows why I'm doing all those shenanigans! The best case scenario though, is to, when possible, get out of the therapy room on "field trips". We go to the library, fast food drive throughs, the mall etc. Marybeth
From: Miruka
How does stuttering affect classroom learning in lower primary children? what help can be available for the affected kids in a education system where speech disability is not recognized like in my country Kenya. As a father of a stuttering son and a linguistic student interested in stuttering as speech disorder is there a body that can assist in sponsorship.
From: Lynne Shields
Miruka, You asked "How does stuttering affect classroom learning in lower primary children?" I don't think that stuttering itself has a direct impact on a child's ability to learn. Where I do believe that stuttering can have an impact is on how the child interacts within the classroom, with the teacher and with peers. If a child feels comfortable about themselves and their stuttering, then they are likely to speak in class, take part in activities with peers, and generally do just as well as if he or she did not stutter. However, if the child worries about stuttering and elects not to participate in school activities, then this can have a negative educational impact on the child. Working with your child to help them feel O.K. about himself, despite the stuttering, is so important. He needs to know what stuttering is (be educated about it), and understand that he can communicate effectively and without shame, whether or not he stutters when speaking. In addition, educating the teachers and other students about stuttering can also have a positive impact for the child. There is so much great information on this conference, as well as in the archives of previous conferences. You might check through those to gain some ideas, and your son might enjoy doing that, as well. There is quite a bit of good information about stuttering that can be accessed from The Stuttering Homepage, the website where all of us are accessing this conference. I wish you and your all the best, Lynne
From: Allison
For as long as I can remember my uncle has had some kind of dysfluency. What I mean by that is he repeats one syllable or sound of a word several times. It does not occur every time he speaks by any means, but it happens often enough during casual conversations that I barely even notice it anymore. Though if another speaker had the same kind of fluency break I would definitely notice. Growing up I always kind of thought he had a little stutter. Now that I am in graduate school learning about fluency, I am having difficulty determining whether my uncle is a person who stutters or not. I have never seen him exhibit any tension or secondary behaviors (nor even acknowledge that it occurred). In fact, I asked him recently if he had ever received speech therapy growing up and his response was "yes, I had a lisp" (no mention of any kind of stutter). Is it possible for an adult to have such a regular dysfluency without it being technically stuttering? Is this just normal adult dysfluency or a person who stutters?
From: Barbara Amster
Allison, it's hard to tell without seeing your uncle but what we consider to be normal fluency varies from individual to individual. In my graduate class in fluency and stuttering, one of the activities that I do with the students is divide them into small groups and each student takes a turn being the 'speaker.' The other students count the disfluencies of all kinds that the students' make. It always amazes the students that most of them are quite disfluent. We usually do not pay attention to these disfluencies and are surprised when we are focused on them. I also have them count my disfluencies and I am a very disfluent speaker although I do not consider myself to be someone who stutters. Because your uncle does not seem to have any noticeable negative reactions to his speech, I probably would not consider him to be someone who stutters.
From: Nancy
Do you mean dysfluency or disfluency or stuttering? What is the difference between the three terms?
From: Ken St. Louis
Nancy, This is from the American Speech-Language-Hearing Association. (1999). Terminology pertaining to fluency and fluency disorders: Guidelines. Asha, Supplement No. 19, 41-2, 29-36. I chaired the task force with Mick Hanley & Steve Hood. Some have said that we need to revisit some of these definitions. Ken 3.2. Fluency Disorder. A fluency disorder is a 'speech disorder' characterized by deviations in continuity, smoothness, rhythm, and/or effort with which phonologic, lexical, morphologic, and/or syntactic language units are spoken. In recent years, the profession of speech-language pathology has adopted the term fluency disorders to denote a category of 'speech disorders' (as opposed to 'language disorders'), that includes such related disorders as stuttering and cluttering as well as the more specific categories of neurogenic stuttering and psychogenic stuttering. Indeed, the SID responsible for these Guidelines deals with 'fluency and fluency disorders.' Specific disorders of rate (i.e., too fast, too slow, or too irregular) are generally considered to be fluency disorders as well, even though other disorders, e.g., word retrieval or insufficient vocabulary, might be present and even responsible for rate problems. 3.3. Disfluency. Disfluency refers to breaks in the continuity of producing phonologic, lexical, morphologic, and/or syntactic language units in oral speech. The generic term, disfluency, refers to breaks that are normal, abnormal, or ambiguous (i.e., sometimes regarded as normal and sometimes abnormal). The most commonly regarded normal disfluencies are: hesitations or long pauses for language formulation (e.g., 'This is our [pause] miscellaneous group.'), word fillers (e.g., 'The color is like red.') (also known as 'filled pauses'), nonword fillers (sometimes called interjections) (e.g., 'The color is uh red.'), and phrase repetitions (e.g., 'This is a'this is a problem.'). The most common ambiguous disfluencies are whole word repetitions (e.g., 'I-I-I want to go.' or 'This is a better-better solution.'). The most commonly regarded abnormal disfluencies (i.e., stutterings) are: part-word (or sound/syllable) repetitions (e.g., 'Look at the buh-buh-ba-baby.'), prolongations (e.g., 'Ssssssssometimes we stay home.'), blockages (silent fixations/prolongations of articulatory postures) or noticeable and unusually long (tense/silent) pauses at unusual locations to postpone or avoid (e.g., 'Give me a glass (3-sec pause ) of water.'), and any of the above categories when accompanied with decidedly greater than average duration, effort, tension, or struggle. Although the term disfluency does not necessarily imply abnormality, it is often used synonymously with stuttering and, as noted in section 3.4, interchangeably with dysfluency. Clinicians often use disfluency to refer to stuttering for a number of reasons, including: (1) they assume it is perceived by clients to be, connotatively, a less negative term than stuttering, (2) they believe it sounds more scientific or objective than stuttering, or (3) they regard it to be synonymous with stuttering. There is little empirical or logical support for any of these assumptions. Clinical researchers occasionally prefer the term disfluency to stuttering because they find it easier to make reliable judgments of all disfluencies than only those further judged to be stutterings. 'Normal developmental disfluencies' refer to higher than adult levels of normal disfluencies that occur in preschool children as they learn language normally. Approximately half of nonstuttering children go through an identifiable period of 'increased normal developmental disfluency' during this time (Johnson & Associates, 1959). Starkweather (1987) introduced the term, 'discontinuity,' because it differentially refers to breaks in the continuity or flow of speech and not to other problems of fluency, such as a rate that is too slow. Given Starkweather's analysis, the Task Force concurs that the term 'discontinuity' makes a useful distinction and, therefore, might result in more incisive use of terminology. Nevertheless, it chose to accord preference to the term disfluency (in spite of its misuses) because it is overwhelmingly the more popular term referring to breaks in continuity. 'Nonfluency' is sometimes used synonymously with disfluency. 3.4. Dysfluency. (Same as stuttering [see 3.5].) According to Wingate (1984), the 'dys' and 'dis' prefixes are quite different. The 'dys' prefix implies abnormality, such that a word beginning with 'dys' denotes an abnormal condition. By contrast, the 'dis' prefix denotes separation, negation, or signals a contrast with the morpheme which follows it. Wingate cites three of four dictionary references to support his view. It must be pointed out, however, that all dictionaries, such as the Oxford Unabridged Dictionary, do not show this distinction. Some hold that the 'dys' prefix in the field of speech-language pathology implies an underlying, organic impairment whereas the 'dis' prefix implies deviant behavior. Accepting the somewhat controversial assumption that the prefixes are different, dysfluency (or 'abnormal fluency') is essentially synonymous with stuttering. However, most recent texts still prefer the term stuttering. As noted, dysfluency is frequently used interchangeably with disfluency (see 3.3), although professional consensus suggests that the two terms are not necessarily synonymous. 3.5. Stuttering. Given the diversity of professional opinion on the what constitutes stuttering, the Task Force recommends that clinicians and researchers recognize and indicate which of the following four uses, or combinations thereof, of the term stuttering they refer to in their references to this fluency disorder. Two uses refer primarily to the behavior of stuttering, and two refer primarily to individuals who manifest the behavior. The first two are essentially perceptual definitions (i.e., defined by a listener), the first from a specific symptom orientation and the second from a nonspecific orientation. The third defines stuttering in terms of private experience of the person who stutters, and the fourth focuses on the suspected cause or nature of stuttering. In all cases, stuttering refers to a communication disorder related to speech fluency which generally begins during childhood (but, occasionally, as late as early adulthood). Some individuals refer to this typical stuttering as 'developmental stuttering.' Others refer to stuttering as a 'syndrome,' focusing thereby on a set of symptoms that may coexist in any stuttering individual. Neurogenic stuttering and psychogenic stuttering comprise special cases that are not subtypes of typical or 'developmental'stuttering, despite the widespread use of these terms (see 3.12 and 3.13). 3.5.1. Stuttering refers to speech events that contain monosyllabic whole-word repetitions, part-word repetitions, audible sound prolongations, or silent fixations or blockages. These may or may not be accompanied by accessory (secondary) behaviors (i.e., behaviors used to escape and/or avoid these speech events). This definition implies that certain categories of symptoms or disfluencies (see below) can generally be classified as abnormal and that others can be considered normal. With this definition, the fact that specific examples within any of the above disfluency categories may be variously perceived as normal or abnormal is generally disregarded. Also, the category of monosyllabic whole word repetitions is not always considered stuttering, depending on such variables as age of the client, locus within the utterance, duration, and other factors. This definition implies that stuttering occurs on specific language units, e.g., words or syllables. This definition is intuitively appealing to clinicians for it renders stuttering a quantifiable phenomenon, suggests specific targets of therapy (i.e., the disfluency categories with the most stuttering), and allows for careful clinical descriptions of accessory (secondary) behaviors (see 3.6). It also has appeal for research, especially in determining beforehand which subjects will and will not be included in stuttering groups. 3.5.2. Stuttering consists of speech events that are reliably perceived to be stuttering by observers. This definition relies on operationalism, i.e., defining a difficult concept by the operations used to measure it. Specifically, the definition implies that a listener or conversation partner does not require a specific orientation to identify instances of stuttering. One does so because he or she knows the language in question and can therefore identify abnormalities in its production. The operations involved are those that are quanitifiable and that specify reliability assessments. The definer must demonstrate a reasonable degree of agreement with other 'judges' on the measures taken, as well as with himself or herself in repeated assessments, in identifying specific instances of stuttering. This definition grants credibility to the obvious situation that one does not need to be trained to recognize stuttering, as is the case when laymen diagnose a stuttering problem. No doubt, speech events regarded as stuttering in the previous definition are responsible for most judgments of stuttering. Nevertheless, with this symptom-nonspecific definition, a 'moment of stuttering' may, in some circumstances, be attributed to disfluency categories which, in other circumstances, would be regarded as normal, and vice versa. As in the previous definition, stuttering is quantifiable and allows for careful descriptions of accessory (secondary) behaviors. This operational definition has appeal for clinicians who choose to use an approach in therapy requiring 'on line' counts or immediate consequences or feedback to be provided immediately after each 'moment of stuttering.' It is also particularly appealing to researchers who require reliable measures of stuttering. 3.5.3. Stuttering refers to the private, personal experience of an involuntary loss of control by the person who stutters. As such, it often affects the communicative effectiveness of the speaker. This definition focuses on the experience of the person who stutters rather than judgments of clinicians, observers, or theoreticians. The most vocal advocate of this view is Perkins (1990), who wrote that 'stuttering is the involuntary disruption of a continuing attempt to produce a spoken utterance' in which 'involuntary' is understood to reflect the speaker's feeling of 'loss of control.' This orientation allows the clinician to appreciate the difference between 'real' and 'faked' stuttering and have a more inclusive definition for the client who claims to be a 'stutterer' but overtly 'stutters' only on rare occasions. This definition has particular appeal to persons, especially adults, with a history of stuttering themselves for it describes what they experience as stuttering. It has been regarded by many to have questionable use alone in clinical and research efforts because objective, replicable judgments of stuttering are difficult or impossible to obtain. 3.5.4. Stuttering refers to disordered speech that occurs as the result of: (1) certain physiological, neurological, or psychological deviations; (2) certain linguistic, affective, behavioral, or cognitive processes; or (3) some combination thereof. This is not a definition per se. Instead, it refers to numerous definitions such as: 'Stuttering is an anticipatory, apprehensive, hypertonic avoidance reaction' (Johnson, Brown, Curtis, Edney, & Keaster, 1967); 'Stuttering occurs when the forward flow of speech is interrupted by a motorically disrupted sound, syllable, or word or by the speaker's reactions thereto' (Van Riper, 1982); or '. . .stuttering constitutes a covert repair reaction to some flaw in the speech plan' (Kolk & Postma, 1997). These definitions focus on theory construction and address the questions, 'What causes stuttering?' and/or 'What is the nature of stuttering?' Such definitions, to the extent that they balance available knowledge with available research technology, can lead to testable hypotheses about the nature of stuttering. Cause-based definitions are appealing to many stuttering clients, especially those seeking 'answers' or insights into their disorder. In some cases, such definitions suggest new or specific approaches to therapy. By contrast, they are generally not suitable for measuring stuttering behaviors in clinical or research settings. 3.5.5. Other As with the case of the 'general' definition provided, a number of definitions of stuttering include elements of more than one of the above variants. For example, the World Health Organization (1977) defined stuttering as 'disorders of rhythm of speech in which the individual knows precisely what he wishes to say, but at the time is unable to say it because of involuntary, repetitive prolongation or cessation of a sound.' The Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Revised (1994) (DSM-IV) indicates that 'the essential feature of Stuttering is a disturbance in the normal fluency and time patterning of speech that is inappropriate for the individual's age.' Stuttering is characterized by 'frequent repetitions or prolongations of sounds or syllables,' but also can include 'interjections ' broken words (e.g., pauses within a word), ' audible or silent blocking (filled or unfilled pauses in speech), 'circumlocutions (e.g., word substitutions to avoid problematic words), ' and monosyllable whole word repetitions (e.g., 'I-I-I-I see him').' In addition the DSM-IV requires that 'the disturbance in fluency interferes with academic or occupational achievement or with social communication' and all these difficulties exceed those usually associated with a 'speech-motor or sensory deficit,' if present. Many individuals who stutter acquire maladaptive patterns of thinking and feeling, sufficiently common to be identified as frequent covert aspects of stuttering. For example, a child who stutters may adopt the belief that speaking is inherently difficult (Bloodstein, 1995). Those who stutter for a number of years often acquire the negative self-concept of a 'stutterer,' leading them to adopt other beliefs and attitudes consistent with this self-concept (Cooper, 1990, Peters & Guitar, 1991). Also, many stuttering children and adults report fear or anxiety about speaking, or the prospect of speaking; frustration from the excessive time and effort imposed by stuttered speech; embarrassment, shame or guilt following stuttering episodes; and even hostility toward other conversation partners (Van Riper, 1982). Stuttering is often used in lay usage to refer to disfluencies (see 3.3), both normal and abnormal. Also, many nonstutterers report that they have experienced stuttering of a sort they would regard as abnormal a few times in their lives. In 1993, as the result of the influence of a number of consumer and self-help groups, the American Speech-Language-Hearing Association (ASHA) adopted a policy in which person-first language is to be used in lieu of direct labels (Executive Board Meeting Minutes, 1993). According to the policy, stutterer is regarded as potentially insensitive to the individual who manifests the problem of stuttering. Therefore, authors are required to use the term, person who stutters, instead of the term, stutterer. Recent articles have tended to use abbreviations, e.g., PWS for person who stutters or CWS for child who stutters to avoid the awkwardness inherent in using the longer versions. No systematic research was carried out to support the ASHA 'person-first' policy. Since its inception, limited research has shown that person-first labeling may or may not be perceived less negatively by speech-language-hearing impaired individuals, parents of such clients, speech-language pathology students, and the public. In the case of the terms, stutterer, stammerer, or clutterer, the results do not clearly indicate that these direct labels consistently communicate greater sensitivity than the person-first versions (Robinson & Robinson, 1996; St. Louis, In press). More research is needed, but the available findings cast doubt on both the need and wisdom underlying the recent changes in terminology. Person-first labeling warrants serious consideration when referring to specific individuals, especially in clinical situations, for it implies that there is much more to a person than the fact that he or she stutters. On the other hand, given the fact that many nonstutterers report that they have occasionally 'stuttered,' the person who stutters nomenclature may create ambiguity in descriptions of subjects in research reports wherein the traditional distinction between stutterer and nonstutterer is important. Until additional research is completed, clinicians or researchers will'and possibly should'use their own discretion in the use of those terms. Stammering is synonymous with stuttering and is the common term for the disorder in Great Britain. In North America, the term stammering is rarely used by speech-language pathologists.
From: Ken St. Louis
Hello again, Just a note to say that I know that the previous very long post is hard to read. If anyone wants to access the Terminology Guidelines, they can do so at:
From: Kevin Eldridge
This question makes me think of one of my brothers. One of my brothers has speech that is on the higher side of normally disfluent. He told me once that he's sure if I didn't stutter that he would have. However, he said, my stuttering was so much worse that he never worried about his. Does this mean that we both had a similar physiological predisposition for our speech to break down, but only my speech manifested into stuttering since unlike my brother, I was very concerned with my speech disfluency. Had he been born first, would he be the person who stutters. I've always found this an interesting question.
From: Mary Dunleavy, New York
Is it easier to stutter in front of someone, who knows you stutter? Does one find that if you have already established before a conversation that one stutters, does it slightly diminish the uncomfortability of stuttering in the conversation? If it is anticipated by the other person in the conversation, whether it be someone you are familiar with or a stranger that you stutter does it alleviate anything or would one prefer to not bring it up at all?
From: Lynne Shields
Mary, Let me start off by saying that I do not stutter. So, my thoughts on this are taken from reports of clients, both teens and adults, who have elected to 'advertise' their stuttering when speaking with people they are meeting for the first time, or in any more stressful speaking situations (e.g., public speaking). Almost to a person, these folks tell me that starting off speaking by using voluntary stuttering, or by actually saying something to the effect, 'by the way, I stutter sometimes', does help them feel less stressed and more comfortable in the speaking situation. Why? They report that stuttering is now in the open, and happens on their own terms. This is preferred to wondering and worrying whether or when they will stutter when they are in a speaking situation. Most of my clients also report that they are much more comfortable talking with close friends. While they will stutter with these people, there is not as much anxiety associated with stuttering, since these speaking partners already know that the person stutters and accept that. They are often people who listen to the person's message and tend to ignore the stuttering, so it is not an issue. The comfort level may certainly vary, depending on how the known speaking partner interacts with the person and reacts to any stuttering that occurs. I suspect that you'll hear from some of those on this panel who do stutter and can give you their personal take on your questions. Regards, Lynne
From: Ed Feuer
I cannot help but note the quiescent and self-congratulatory tone among the profs here. Given the fact that stuttering is by no means "solved," one could reasonably expect the critical thinking necessary in the scientific method would call for some disagreement with each other. You know, the one about the impossibility of making omelets without breaking eggs? Having said that, would the profs prefer that we who stutter be more like aphasics or swallowing disorders people? In other words, don't challenge any paradigms of the status quo in which we are heavily invested; don't make waves and above all, don't get the institutional bill-payers thinking. Or would at least some of you prefer that we who stutter be like the kid in the story of the Emperor's New Clothes? (My apologies in advance to aphasics and swallowing disorders people dissatisfied with SLPs.)
From: Ken St. Louis
Hello Ed, I guess we're not argumentative and uncompromising enough for your taste. If that is the case and assuming you are following the current campaign for midterm elections in the USA, I wonder if you are happy with the attack ads and half-truths being put on the airways. As I have written in past conferences, I won't debate you on this, but I will say that we do listen to those who stutter. I stutter myself from time to time, but mostly I believe I would be considered one of those "fluenters." It was the stuttering self-help leaders that pushed the hardest for specialty recognition, and the Special Interest Division on Fluency and Fluency Disorders was the first one in ASHA to develop a specialty recognition program. The NSA provides much needed continuing education for nonstuttering SLPs. This conference itself is evidence that we listen to those who stutter. I have always been quite outspoken, but I believe that courtesy and trying to appreciate other points of view will lead me closer to the truth than drawing a line in the sand. Van Riper, whom you seem to admire, was once credited with a compliment I have not forgotten (although I do not remember who said it). "He learned from those he disagreed with." Ken
From: Ellen-Marie Silverman
Ed, Thank you for this feedback I am taking it to heart.
From: Walt Manning
Loved Ken's response. Ed, if it's debate and some level of (professional) disagreement you're looking for you may want to read past, current, and upcoming letters to the editor in the Journal of Fluency Disorders.
From: [no name]
Many speech pathologists (many have not taken a class on stuttering) feel threatened by people who stutter (they don't listen to PWS). They just think technique technique technique, I just need to teach the person some prolongation strategies and I did my job. Many SLPs think stuttering is bad and no stuttering is good, so kids or adults just avoid stuttering to make the SLPs feel better or don't get criticized by the SLPs. Many people who stutter and their families have been frustrated with 99% of the SLPs out there. Do you (the "experts") think/know it is that bad. How come no one replied to Tom Weidig's question? Why are SLPs against medication for the treatment of stuttering, or the SpeechEasy. Is it money and or jealousy? What about helping people who stutter and children who stutter? Weidig asked: "Why does no-one answer the questions on Lidcombe, Pagoclone, or Speech Easy??" How can a SLP who have no training (not one class on stuttering) be qualified to treat stuttering? This is medical malpractice? right??
From: Eldridge
I was about to call it a night, but decided to put a little more wine in my glass and reply to this anonymous post. I don't' agree with your first statement that SLPs feel threatened by PWS, but I will agree with your second that way too many SLPs focus on technique, technique, technique. I would argue that this is due in part to to ASHA's willingness to certify an SLP to treat any disorder without requiring that they take a course or treat a client with every disorder. If you don't understand the disorder, techniques seem to make sense. I can assure you however that the Specialty Board on Fluency Disorders will NOT grant Board recognition to someone who only "thinks technique". I can say that with authority because I have been on the Board for 3 years. I'll also disagree with you on why kids avoid stuttering with their SLP. I for one, didn't want to make my SLP feel good, as much as I wanted to please her. I wanted her to be proud of me and how I was doing in therapy. Heck, I wanted everyone to be proud of me. This was a big part of my problem :-) Because of this, I wasn't totally honest about difficulties I was having. Was this entirely her fault? I would argue no. I also agree with you that many people who stutter have been frustrated with their SLPs. Does the field really understand this? Probably not to its full extent. But that is partly because PWS don't let their SLP know they are unhappy. If we are going to start throwing blame around, it is going to be on everything and everyone. As for medication, I am not against medication. If there was a medication that worked, I'm guessing every SLP I know would be incredibly happy. Most of us who work with PWS, are passionate about helping them to communicate and will do whatever we can to help them accomplish that goal. I know that if I could simply tell a PWS or a parent of a PWS, that all they (or their child) had to do was take a pill, I'd buy stock in the company and put ads in the papers. As for the Speech Easy. In my opinion, it was marketed way before they had any data to show that it will be helpful in the long term. When I personally asked members of Joe Kalinowski's lab why they were pushing the product before they had proof it would work in the long run, they told me that they owed it PWS to make it available. I didn't the explanation then, and I don't buy it now. Don't get me wrong. When I was 15 and terrified to talk, I would have begged my parents to spend the cash for the cure. But the research just isn't there. And on top of that, I work with people who tried it and abandoned it. Granted, those who it works for, wouldn't come to see me, but I am yet to be convinced. Hey.. I wanted to believe the kool-aid would work. The data that I have seen (from labs other than those of the maker) suggest that most people end up putting it in a drawer. Finally, if you are upset as I am that people can be certified to treat PWS even if they have never had a class in stuttering and never worked with a PWS, call ASHA (the American Speech-Language Hearing Association) at 800-331-1212. SLPs who work with PWS have let them know we are not happy, but our complaints have fallen on deaf ears. Maybe if they start hearing from PWS they will listen. In closing, I think you brought up many good points. I've tried to point out where I agree and disagree. I hope this was helpful. There are stories told of how the "giants in the field" use to debate during the day and then have a beer together at night. I guess they realized that while they might disagree with each other, they were all fighting the same battle. I think you and I are fighting the same battle too, so it is counter productive to fight each other.
From: Pam Mertz
I just absolutely loved this reply. I t was honest and made a lot of sense. I have been following this discussion closely - it is very revealing. IAs an adult who stutters, I have had very limited experience with speech therapists who understand stuttering. I have only worked with SLP students, who were lucky to be in a program where they had to take a fluency course and do a fluency practicum. But I still feel it didn't benefit me, as was in a place where I needed (still need) work on acceptance and feelings. That said, since Kevin mentioned ASHA, are PWS, who are not SLPs or students, ever invited by ASHA to present their story? I am curious about that. I have looked on the ASHA website a few time and it seems the papers/presentations are fairly clinical-based. I think this is a great thread for non-professionals to glimpse, as it shows that there is still much work to be done to bring professionals and consumers together on some of the controversial issues. Hope no one minds that I chimed in here!
From: Ed Feuer
Ken, it's not a case of not being argumentative for the sake of being argumentative. There are serious problems, major deficiencies, and I just don't see your profession dealing with them. I will dredge up my laundry list here for those who don't know: clinic-room fraud; token therapy; short-term quickie fixes; distractor devices and some SLPs peddling these devices; the false hope of the pink pill; flawed research methodology in which subjects are not differentiated according to severity, age, gender, overt, covert, before or after intensive treatment; school boards paying SLPs unqualified to treat kids who stutter; and other SLPs not blowing the whistle in such situations; ASHA not enforcing standards; no stuttering-dedicated ASHA ombudsman; no independent third-party assessment of therapeutic efficacy; and the absence of genuine coordinated multidisciplinary interaction for the treatment, repeat, for the treatment, of stuttering. So, Ken, Walt, Ellen-Marie, Kevin and other profs: What is the profession doing to remedy the above? Remember, folks, dirty laundry that is not washed in public is laundry likely to stay dirty. And while I'm not from Missouri, the "show me" state, I'm in Manitoba which is north of Missouri. Show me.
From: Ken St. Louis
Ed, Oboy. I said I would not get into a debate--and I won't. But consider this rhetorical question. What are the leading journalists and the journalism profession doing to deal with all of the fraud and shortcomings in that profession which affect us all--far more than the 1% of the profession who stutters? I assume here that you do consider yourself to be a member of the journalism profession, but I could well be incorrect. Answer that question comprehensively. Then do it for lawyers, social workers, chiropractors, bankers, military officers, auto mechanics, etc. I dare say you'll know why the problems you list exist. Will that fix them? No. While I support our code of ethics and do my best to abide by it, I have chosen to try to shed some light here and there where I feel I can make a positive contribution. I've decided it is not much use to me or to anyone else to curse the darkness. You may disagree. Ken
From: Ed Feuer
Ken, with all due respect, last time I looked this forum was about issues surrounding stuttering, not journalism. I do note, however, that you have not responded to my question, namely, what is your SLP profession doing to remedy the problems I cite. But come to think of it, it probably wouldn't hurt if mainstream journalism were to take an investigative look at these issues involving your profession, stuttering and its treatment. Might be the only way to effect sorely needed change. And since you raise the subject of journalism, it might be said that what I am trying to achieve here, in my very small way, is one of the highest callings of us ink-stained (now keyboard-strained) wretches 'telling truth to power.
From: Kevin Eldridge
Pam, I'm glad you liked my reply. You asked whether ASHA ever invites PWS to tell their story. I can't think of a time when they have put out an invitation, but I think that the more PWS who take the time to contact ASHA to share their story and their desires for change, the greater the likelihood that they might actually initiate change. So I encourage you,and any other PWS (or parent of a CWS) to make your voice heard.
From: Pam
Kevin, hmmm . . . you would think ASHA would do the inviting, especially as it seems that there are so many SLP's who have never even taken a fluency course. It would seem to me that would be the best way for new SLPs and students to learn - hearing directly from PWS. I remember last year, I was lucky enough to address a group of SLP's (87 were present) for their annual training. They had asked for training on stuttering. Two SLPs who are also pws, and me, a non-SLP, facilitated a 6-hour CEU training. Many of the SLPs said it was one of the best trainings they had ever attended as all 3 of us presenters stutterered, and it was so much more real.~Pam
From: Vivian Sisskin
I am not defending ASHA, but we all need to take some responsibility. What ever happened to the idea that professionals should not treat a disorder that they do not feel comfortable treating? Standing up to one's employer or 'doing the right thing' as a private practitioner? I have a child with autism. At the beginning of a new school year he was put in an 'autism class' with a teacher who had just graduated from a local college with a teaching degree in science! When the classroom exploded, and the students were in physical danger, I (as a parent) went in to help and restore things to a working classroom. I asked the teacher and her supervisors why she was given that assignment. She (and they) said, 'she was qualified'. I asked her if she felt qualified to teach adolescents with autism, and she replied, 'no, but they told me I was'. Shouldn't she know better?? Do we take every job we are offered? No, I will not agree to be a fire swallower even though I am qualified. Many SLPs who specialize in stuttering may not feel comfortable doing swallowing therapy. We don't do it because our mistakes can be dangerous to the patient. Perhaps the administrators (and SLPs themselves) do not think that they can harm a PWS with poor treatment? But we know they can, especially if they are taught techniques that turn into struggle behaviors, promise them cures, or blame them for not practicing enough when the outcomes are poor. There are over 120,000 SLPs who belong to ASHA. The last part of this portion of the ASHA Code of Ethics should be guiding us: Individuals shall engage in only those aspects of the professions that are within the scope of their professional practice and competence, considering their level of education, training, and experience.
From: Kevin Eldridge
Vivian, I agree with you 100% that SLPs should say NO when asked to treat a child they know they are not qualified to teach. The problem is, by virtue of the CCC, ASHA gives them the credential to treat every disorder, so school superintendents and lawyers argue that they ARE qualified. The reality is that MANY SLPs "don't say no". How do we get them to honor the Code of Ethics they are supposed to uphold? How can they argue with the school lawyers who say that ASHA says they ARE qualified?
From: Retz
Interesting thread. Given that ASHA has forgotten and no longer cares how/why the field of speech and language came into existence, refuses to listen to current experts in stuttering regarding the travesty, no longer gives any thought to the ethics of not requiring those who it licenses to have to take actual course work and clinical practicums in preparing to work with clients who stutter, and, in fact, grants it CCC's, as well as protects, those who are not prepared in any manner, shape or form to treat stuttering in the public school, hospital, and private clinic settings, it is my feeling that the field will ONLY change after a extremely wealthy parent of a child who stutters initiates, pursues, and wins a judgment of an extreme amount of money against a unprepared ASHA certified school based speech and language pathologist and that pathologists employing school district for the damage done to their child who stutters in "therapy". This, of course, is only my own opinion.
From: Nan Bernstein Ratner
People! Do you think your internist or pediatrician knows everything? (try stuttering as a first example, but much more death-defying conditions after thinking on that). A field grows and then specializes because no one can know everything. I am the first to want my field to be better educated, and to spend more time keeping up with advances in the field after receiving their credentials (studies of our field put us right there in the middle of other medical and paramedical fields - in that no one seems to keep up with the literature; have fun on your next annual checkup with your dr). To think that everyone in our field should be best qualified to treat stuttering is a delusion - we don't think so for diabetes, for cancer, or for heart disease - we go to specialists. Give the ragging a break. Nan
From: Ed Feuer
I am heartened by the responses of Vivian and Retz. Now, Nan, you say, "To think that everyone in our field should be best qualified to treat stuttering is a delusion." If that is indeed the case, why should anyone in your field who is not qualified to treat stuttering doing so? Why is that tolerated by ASHA? Why do other SLPs who know what is happened not blow the whistle on these people to ASHA and the institutional bill-payers? You say, "We don't think so for diabetes, for cancer, or for heart disease - we go to specialists." First of all, Nan, even within the parameters of the ASHA establishment party line, comparatively few of these "specialists" are available for most people who stutter. Secondly, for the diseases you cite, treatment usually involves multidisciplinary teamwork because even the specialists lack both the necessary time and knowledge to do it all. I wish members of your profession would finally acknowledge this. That would mean putting the needs of stuttering clients first in place of the fear that the whole edifice could collapse. edfeuer@mts.net
From: John Paskievich
I've met many knowledgeable and dedicated SLPs. I've also met many who work in the public school system but know very little about treating stuttering. If I had a child who stuttered I wouldn't allow a school SLP near the kid. The token fluency shaping that these therapists do result only in the raising of false hopes in the children and those who love them. If someone feels or is unqualified to treat stuttering they shouldn't do it. I'm qualified to drive a car but not a cement truck or a semi-trailer. A similar class system couple should be applied to SLPs. What is preventing this?
From: Retz
John - your observations re: public school therapists and public school therapy for children who stutter is very thought provoking to me. ASHA requires no coursework or clinical practicums in the area of fluency disorders in order to receive the certificate of clinical competence (CCC-SLP). Many universities undergrad & graduate programs do not require any coursework or practicums in fluency disorders as well. It is my experience that there is little, if any, serious discussion or coursework re: "ethics" or "effects of no ethics" in the setting of university training programs. Many many graduating SLP's with and without their CCC's go out and routinely give "therapy" to CWS in the public schools. In my interactions with parents who are smart enough to get into Support Groups for those who stutter, the parents often say that State Department of Public Instruction and school districts routinely tell parents of children who stutter that because a public school therapist has their CCC's and/or state license, that they are qualified to do therapy. Often, the SLP's in the schools will attend a 2 day to 3 week "training" in the area of stuttering, and return believing they are now "experts". The concept of "referring out" is a heavily discouraged action and an employment ending decision for a school based therapist with guts enough to make it. It is a serious quandary for parents of CWS, as well as for the overall outcome for that child who stutters. Some in the professional field look at the revealing and discussion of this fact as "ragging"...Others look at it as a "disgrace of a profession." Some in the profession seek honors offered by/through the profession...Some seek for the field to be honorable. Some in the profession see/hear only the "stutter"...others see the child who stutters. Bob Quesal has spoken quite often about what he sees as the two camps in the area of fluency disorders - one camp is the "touchy feelies" who look at the whole person who stutters ...Others are what he called "Fluency Bigots." It is, to me, a serious problem that is for whatever reason not addressed by the profession. That being said, some professions do what is best for the clients they are privileged to serve; Some professions serve their professionals. Parents of a child who stutters are the child who stutters best hope...To me, it is worth "ragging" about until it is resolved in the manner for the best of those of us who stutter.
From: Belinda Randall; Southern University (Graduate Student)
Can an adult who has suffered from a TBI in which caused him/her to develop Aphasia also develop a stutter? If so, could it be possible for the patient to recover from the stutter?
From: Judy Kuster
The basic answer to your questions are yes, and possibly. There is even a report about a person who stuttered, who lost his stuttering after a stroke (http://www.personalmd.com/news/n0913090822.shtml but I have not found the article in Neurology referred to in the URL. To learn a lot more, there is a huge bibliography about neurogenic stuttering you may find helpful in answering your questions and providing you with a lot of additional information, at: http://www.mnsu.edu/comdis/kuster/related/neurobib.html Also, check the brochure from the Stuttering Foundation at http://www.stutteringhelp.org/Default.aspx?tabid=81 which briefly addresses treatment. Most of the texts used in stuttering courses also address your question well.
From: Ari (Israel)
I hear from a lot stutterers that they are very disappointed from the treatments they passed, and they say all the treatments don't help. As a person that suffered so much, until i learned about stuttering and found the right treatment for me, this break my heart. The most SLP'S treat stuttering without knowing how to treat it, and the little that have experience with stuttering treat all the stutterers with the same narrow method. Is it unrealistic, that any SLP that treat stuttering will know all the complicates dimensions off the problem, and will give the best treatment that suitable to the patient needs?
From: Lynne Shields
Ari, I agree that some people who stutter have not received the best services. It is important for consumers to educate themselves about the available services and interview those from whom they may wish to obtain services. It is also important for SLPs to provide services for which they are adequately trained, and refer to other SLPs when they do not have adequate training. Both of these things would happen in a perfect world. Given that this isn't always the case, getting the word out through venues such as this donference, and through stuttering support groups, like the NSA and Friends in the U.S. and other groups elsewhere, are ways that we can all work to make positive changes. Those of us who work with people who stutter keep ourselves up to date by attending meetings, consulting one another, reading current research, and talking openly with and learning from our clients. I know that many of us make ourselves available for training other SLPs, for consultation, and in many other ways. I am hopeful that, little by little, through many different ways, we can all get the word out so that those who wish to engage in therapy for stuttering will be able to obtain effective services. Best regards, Lynne
From: Ari (Israel)
Thanks for your reply. The sad fact is that the most stutterers are not satisfied from the treatment they have, and a lot of them advice to others, to save the money cause all the treatments don't help. I hope that actions like you told of, will change something, but i afraid that this won't be enough!
From: Lynne Shields
Ari, I understand how people who have had poor services come to the conclusion that there are no good SLPs. It seems to be human nature to overgeneralize to an entire population, based on one or two exposures; to stereotype a group. All we can do is address the issue one person at a time, each of us, whether SLPs, who can seek continued education in the area of fluency, and give of their time to educate the public and other SLPs, and consumers, who can share both their positive and negative experiences. I'd like to see the issue approached similar to the way many of us deal with physicians. In the process of selecting a pediatrician for my children, I interviewed several doctors. In my own case, when I have been treated by a physician who, in my opinion, gave poor advice or medical care, I declined to see them again (saving my money, as you mentioned), and made it my business to seek out a different physician. I did not assume that all physicians were poor caregivers simply on the basis of a few doctors who probably should not have been treating patients. When someone contacts me seeking fluency treatment, I suggest that we meet or talk over the phone to discuss their concerns and my approach to treatment, allowing them to make an informed choice before committing to treatment. A problem that has been decades in the making cannot be changed quickly. I do see more presence of stuttering in the public eye, and there needs to be more in order to turn things around to the positive. So, I remain hopeful. Regards, Lynne
From: Ari (Israel)
I think that going to SLP is different that going to see a Doctor. A lot of stutterers don't believe that there is treatment to their problem, and when the treatment doesn't work they give up. Also they don't have friends that will recommended about good SLP, and also when they hear about one, it could be that the specific treatment don't fit to their stuttering. Several parents asked me who therapist I recommended to treat their child? and my answer was depending the stuttering kind. And sometime i recommended that he will start with one therapist, and after it he will continue with another approach. I think that stuttering can be so hard,and we don't need to go from therapist to therapist until we find the right one. With doctors also i usually happy with them, and i don't need to meet ten doctors to choose the right one for me. For my opinion only SLP that understand all the aspects of stuttering, have the right to treat stuttering. Thanks for your reply.
From: Lil' Peter (age 11)
Which kind of therapy works the best for kids age 11?
From: Ken St. Louis
Dear Peter, I can see that you want an answer. If I were your speech-language pathologist (or "clinician") and you came to see me, I would do my best to give you an answer. I would of course tell you that whatever I thought was the best approach to therapy for you was just my best opinion at the time. If you wanted to permanently eliminate your stuttering, I'd tell you that we could try to do that, but we would be risking failure. It would be like trying to permanently eliminate all spelling mistakes. Still, if I thought that you could change your stuttering by concentrating on such things as your rate (speed) of speaking, tension in your voice box, or tension in your throat and mouth, I believe we could reduce your stuttering a whole lot. Or if you didn't mind some mild stuttering but wanted to reduce the struggle in your more severe stutterings, I believe we could do that as well. In either case, you would probably find a lot of relief if we simply talked about stuttering, maybe even in a group, and taught you to sometimes just go ahead and stutter. (It turns your avoidance upside down to go ahead and do what you usually avoid doing!) What this all means is that the therapy that "works" the best is the one that helps you get what you are looking for and be able to maintain those gains. Sometimes your clinician, like any good coach, will have to explain that what you want either may not be realistic or possible. But usually, by discussing and working together with your clinician, you can get closer to the best approach then by either trying everything that comes along or doing what every other client does. Maybe this will help answer your question. Ken
From: Gary J. Rentschler
Peter: There was a survey done a while ago in which people who stutter said that it was their speech pathologist that was the most important ingredient of their success in therapy, rather than any specific therapy program. So I'd suggest working extra hard with your speech therapist and do your best to do exactly what he or she advises you to do and I"m confident that you'll get the best result from therapy.
From: Sheree Reese
Hi Peter, just to add to Gary's , there is a lot of research that says that how good your relationship is with your therapist plays a huge part in how successful your therapy will be.
From: Jerry
Hello Dr. Reese (or another expert), do you have the citations for the research data you mentioned in your previous post. Why does the therapist matter if the method works (and if the therapist is qualified). Are you saying that some therapist are not qualified to treat stuttering? If the therapist is not qualified, no method of treatment will work?
From: Erin Dyer
Dr. Bruce Wampold of the University of Wisconsin in Madison has done research that shows that the relationship with the therapist had the greatest impact on the success of therapy. Walt Manning would be able to give the specific citings.
From: Walt Manning
Here are some references about the importance of the therapeutic alliance (regardless of the treatment protocol) and the common factors model for informing us about the process of therapeutic change. Patricia Zebrowski (Iowa), Nan Ratner (Maryland)and others have also written about these issues. Ahn, H., & Wampold. B. E. (2001). Where oh where are the specific ingredients? A meta'analysis of component studies in counseling and psychotherapy. Journal of Counseling Psychology, 48, 251'257. Brown, G. S. (2006). Common factors and therapist effects in therapy outcome. Presentation to the annual meeting of the American Speech'Language'Hearing Association, Miami, FL. Wampold, B. E., & Brown, G. S. (2005). Estimating variability in outcomes due to the therapist.: A naturalistic study of outcomes in managed care. Journal of Consulting and Clinical Psychology. 73(5), 914'923.
From: Tony
Is the Valsalva Hypothesis by SLP Bill Perry correct or incorrect? He has given presentations at NSA and he thinks it is correct. How come no research data or experiments?http://valsalva.org/
From: Judy Kuster
Tony, Bill Parry had an article "Stuttering and the valsalva mechanism: A hypothesis in need of investigation" published in the Journal of Fluency Disorders in December 1985 (pages 317-324). I can find no evidence that there has been a response to his call for research about the relationship of the valsalva mechanism as it relates to stuttering. Parry has recently completed a master's degree in Speech-Language Pathology. I don't know if he has done any research into his hypothesis during his MA program or since. You might try to contact him through his website and ask him.
From: Glennie Llano
As a communications student, I have become more aware of how upsetting it is when someone doesn't react respectfully to a disfluent person (such as rushing the speaker to finish his statement or question), or simply when the person reacts differently then he/she would normally react to a fluent person (such as avoiding the speaker who is disfluent by reducing or eliminating eye contact completely). How should I suggest to my friends and family how they ought to react if they meet a disfluent individual? How can we encourage people to prepare to be mindful of their reaction?
From: Judy Kuster
Check the Stuttering Foundation's brochure - 6 Tips for Speaking With Someone Who Stutters http://www.stutteringhelp.org/Default.aspx?tabid=538 This brochure, with the permission of the Stuttering Foundation, was translated into Albanian, Bulgarian, Czech, Chinese, Danish, Dutch, French, German, Hebrew, Hindi, Icelandic, Japanese, Korean, Napalese, Norwegian, Portuguese, and Russian for a previous online conference. All of the translated brochures are available at http://www.mnsu.edu/comdis/isad10/papers/translation10/translation10.html The National Stuttering Association also has a downloadable brochure, "Notes to Listeners" (http://www.nsastutter.org/pdfs/newsletters/m_511.pdf I would challenge you (and others) to download or order copies of brochures not only to educate your family and friends about how to react to someone who is stuttering, but also to pass out a ton of brochures on October 22 as a way to celebrate International Stuttering Awareness Day.
From: Cilek
In addition to all of the favored recommendations about not finishing sentences, maintaining appropriate eye contact, etc., I would also suggest that giving people information about stuttering is the most helpful in helping them react appropriately. If they can have a 2 or 3 minute inservice on what stuttering is, it will then be more natural and easier for them to respond respectfully when they meet someone who stutters.
From: John Tetnowski
I think the best thing to do is to ask the person who is speaking how they would like for us to respond. Of course, this question should be asked only in a one-on-one situation. I have met people who NEVER want us to talk for them, but I have also met people who have said, "If you see me struggling for a long time and know what I am trying to say, please say it for me". Some people have also given me a cue that signifies when they want or need help. It is different for all, and the best way to find out is to ask. Not to mention, the self-esteem and trust that can be built by allowing people to make their own choice. Thanks for the question, John Tetnowski
From: Erin Dyer
My personal journey toward learning as much as I can about stuttering has left me with several observations. No one approach works 100% of the time for all PWS. I see struggle to avoid saying something that may come out as a "stutter". But what I've observed over my years of attending the NSA Conventions is that as people begin to accept that sometimes they will struggle or have normal "speech mistakes", the presence of stuttering reduces. I have talked with a number of adults, teens and children. Those who are able to face their fears, seem to be more able to speak with ease - even if they do repeat sounds, syllables, ... I work with a junior in high school, whom I diagnosed with cluttering in elementary school. She developed stuttering behavior (tense repetitions) a few years later which I believe was in response to her mother's constant reminders to slow down. The parents divorced and the student lives with her father now. I have not heard any tense repetitions from the student, but she has indicated that cluttering is her main fluency disorder, based upon recognizing that she exhibits 5 or 6 of the characteristics. I am very proud of this student because when she realized that the author Lewis Carroll was a stutterer, she commented on how interesting that was because she stutters too. During the past 7 months, this young lady has accepted she sometimes stutters and if other people have a problem with that, it's their problem. I asked if she would feel embarrassed to reveal that Lewis Carroll stuttered when she gave her speech about him, she said "NO WAY!" Her speech to her class went very well. Was her rate too fast at times? Yes. Did she omit some of the sounds in some of the multisyllabic words? A few. Did she hold her head high and look people in the eye as she told them about this man who had something in common with her? You bet she did! I hope to some day bring this student to my support group at the university as she would be a great model for some who have not been able to address their own personal FEAR FACTOR.
From: Marybeth Allen
Hi Erin, Thank you for your and story about your student. She is lucky to have you as a therapist ... someone "who gets it". Although all our clients are individuals with different histories and journeys...no matter what "speech modification" or "speech fluency" approach I use with my clients, I also know that as long as they "fear stuttering" , they will have a very difficult time using that new motor behavior in the "moment of their fear". I also speak from my own experience and heart... my road to fluency only began (after years of therapy) , at the age of about 37 when I broke through that wall and finally understood that I didn't care what people thought of my stuttering and that my stuttering didn't define who I was. So, like you said...it's all about "the fear factor". Thank for your story. Marybeth
From: Gloria Klumb
Hi Erin, You and I have talked about the Fear Factor a few times. Yes that fear is a big thing with people who stutter. Stuttering brings on Fear and Fear is stuttering. I am not sure if my thinking is right on this, but I think the older we get we tend to feel to Heck with it and try and drop the fear. Not sure if we stutter less or just don't pay attention to it and think we stutter less. But I do know on my bad days at work and I have to page some one I will avoid certain words. Or just find the person I want to talk with.
From: Gunars
Have you ever used rational emotive behavior therapy (REBT) or cognitive behavior therapy (CBT) as a part of your stuttering therapy protocol? The reason I ask: I've found from personal experience, and from talking to others who have used REBT or CBT alongside traditional stuttering therapies, that people who stutter can better manage their fluency (reducing the severity or frequency of stuttering) or even, in some cases, become spontaneously fluent (speak fluently without trying) simply by changing their thoughts and attitude towards stuttering, as taught in REBT & CBT. What is your experience with these therapies? Gunars Neiders, Psy. D. Candidate P.S. My friend, Will Ross, and I are writing a self-help book ' based on my dissertation ' teaching people who stutter how to use REBT & CBT to (1) enhance their self-acceptance, and (2) change their view of stuttering to develop greater fluency. If you'd like a copy of the book once it's published, please e-mail me at neidersg@comcast.net
From: Erin Dyer
Actually, I just used that approach with a different high school student as well as a college senior. I do need more training in both but it felt so great to be using the REBT with the first student. It really helped him to look at his behavior of trying not to stutter. I was so excited that day! I've been aware of your frequent regarding REBT and have read some of your writings. Erin
From: Ken Logan
I have used it (with some success) with some teens and adults who stutter. In all cases, it has been used as a part of broader fluency management plan. There is a large research literature on the outcomes associated with cognitive behavioral therapy, and some of it includes studies with people who stutter. My experience has been that while the approach can be helpful in improving a person's performance during particular activities, it is by no means a "quick fix" for altering broader issues such as the sense of shame that some people feel as a result of their stuttering. Maybe one can rationalize his or her way out of the underlying beliefs that lead to shame over time, but, from what I've seen, the journey to self-acceptance (acceptance of one's disability) involves something more than rational thinking. So, as with other treatments that are used with stuttering, I think it's part of the solution, but not a stand-alone approach.
From: Gunars
I think you're right, Ken. There don't appear to be any quick fixes for overcoming shame and low self-esteem. No matter what approach is used, it takes hard work and lots of practice to develop self-acceptance. In all probability, it is a lifelong journey. The reason I favor REBT is that in my experience'and as tackled in our book in gruesome detail'REBT handles shame and self-acceptance exceptionally well. It clearly defines emotional disturbances such as shame and non-acceptance; it shows how clients create these disturbances by putting unnecessary demands on themselves; and it provides a targeted treatment course which clients can use to develop a profound philosophical change that brings long-term results. And as you rightly note, it can also be used to enhance a broader fluency management plan.
From: Barbara Amster
Gunars Evelyn Klein and I have talked about our experiences using CBT in article at a previous ISAD conference http://www.mnsu.edu/comdis/isad11/papers/amster11.html and our experience was very positive. But I agree with Ken that it is not a 'quick fix' for stuttering, but can be a helpful addition to therapy.
From: Gunars
I found your article very interesting and a good start for changing a client's self-image and over-concern about stuttering. You did very well considering that the duration of your treatment was only eight weeks. My co-author and I take a slightly different approach using 'industrial strength' rational emotive behavior therapy. REBT traces a path from the client's various stuttering behaviors, through the unhealthy emotions precipitating the behavior, back to the root cause of those emotions: unwarranted demands on oneself. Clients are then taught a variety of cognitive and behavioral exercises to uproot their demands, thereby replacing their unhealthy emotions and self-defeating behavior with healthy, self-helping alternatives. Clients can practice using these tools with the guidance of their therapist and as 'homework' away from the clinic. These exercises'including voluntary re-repetitions (called Iowa bounces by the late Wendell Johnson) and anti-shame assignments'help to reprogram the brain until the client no longer fears certain situations, such as as talking on the phone. P.S. One of the duties of my internship is to provide emotional support to clients (90% of whom I speak to over the phone). I no longer have any fears when talking on the phone. With a mixture of spontaneous fluency and managed fluency (the result of combining REBT with traditional stuttering therapies), I can pass for a normal speaker with no greater frequency or severity of speech disruptions than my fluent co-workers.
From: NAME
PARAGRAPH
From: Erin Dyer
I work with a young man who has frequently displayed anxiety. Has anyone ever worked with an adult who stutters that has taken medication for extreme anxiety? If so, what was it? How did the medication impact the stuttering?
From: Ken St. Louis
Erin, I have worked with at least two stuttering adults who self-medicated (with alcohol) to the point that they had serious alcohol abuse problems. Both had been in trouble with the authorities for DUI, etc. That is not what you asked, and I have not worked with adults on anti-anxiety drugs that I can recall (or knew about). I did work with an adult, a college football player, who could not stand to hear stuttering, even on tape. (He had pushed me up against the wall and almost hit me when I was modeling different ways of stuttering.) Our first few weeks of therapy involved turning on a tape recorder of stuttered speech, first someone else and later the client speaking, with the instruction to listen as long as he could tolerate it before turning it off. We kept track of the "tolerance time" and gradually increased it. Ken
From: Annie
Dear Professors, my son stutters and school therapist was not that helpful over the years, he is now in college and having a lot of trouble with his speech. What is your advice? He is fine at home with us, but has a lot of trouble when he goes out and is out with friends and strangers. Someone told me about the McGuire Programme, is that a good program? Or maybe try the SpeechEasy?? I really don't know, thank you for your help and advice. Annie
From: Lynne Shields
Annie, It is hard to say what type of treatment will be of greatest benefit to your son from this 'far away'. If your son is interested in seeking therapy, then finding a speech therapist who is knowledgeable about stuttering and with whom your son can develop a good working relationship is probably the place to begin, rather than seeking a specific therapy that is 'best'. Research is informing us that it is the combined effect of a good working relationship with a therapist and good therapy that bring about successful treatment. The Stuttering Foundation and the Fluency Specialty Board websites provide contacts for SLPs who are very familiar with stuttering and other fluency disorders. If you do not live near any of them, perhaps you may locate SLPs through your national or local stuttering support groups or national speech therapy association. At any rate, once your son finds someone, it is a good idea to interview the SLP to a) find out their view of stuttering treatment and what ideas they have to suggest to him and, b) to determine whether or not he believes that he would like to work with this person. There are quite a variety of treatment options, some of which may fit your son in terms of his needs and preferences. A good SLP will work with your son to determine a good fit. All the best, Lynne
From: Kevin Eldridge
Annie, The McGuire Program and the Speech Easy (the two approaches you mention) both report rather dramatic and quick results. While I am not well versed in the McGuire program, I can tell you that quick fixes rarely work in the long run. Lynne's advice to seek out an SLP to help your son determine what will work best for him. She mentioned the Stuttering Foundation and the Specialty Board on Fluency Disorders as two websites you can go to find a list of speech pathologists who are knowledgeable about stuttering. The website for the Stuttering Foundation is www.stutteringhelp.org and the website for the Specialty Board is www.stutteringspecialists.org. Good luck.
From: Holly Thiele
I'm currently seeing a client in my school's clinic who experiences no stuttering-like disfluencies unless she is giving a presentation. When she is giving a presentation, she exhibits moderate stuttering. She experiences part-word repetitions, whole-word repetitions, numerous blocks, and interjections. She seems to show no pattern on words that she has difficulty on at all. We are currently working on pacing to decrease her rate of speech, which has worked a little. We have also added carrier phrases to her speeches that seem to help with her fluency. Does anyone have any other suggestions for this client?
From: Marybeth Allen
Hi Holly, My first thoughts are: have you had a discussion as to WHY she thinks she stutters only during presentations? Could you identify some of her thoughts and attitudes and then begin address any negative ones with cognitive behavioral therapy strategies? My second thought is: I would also really explore her speech characteristics in other areas of her life; thinking perhaps she may be a covert PWS at other times? Marybeth
From: MD
I started stuttering after suffering constant severe headaches. What's the relation?
From: Ken St. Louis
Dear MD, I don't know your age and the age your stuttering started, but I am assuming it was during adulthood. I also, do not know how recently your stuttering and the headaches started. Please reply and clarify those important issues. In any case, it is very unusual for stuttering to begin after a period of severe headaches. That being said, although much less common than simply appearing in childhood, stuttering can be first noticed after a wide variety "trigger" events, many of which are related to psychological and even physiological stress. If the stuttering started recently after a bout of headaches that also were relatively new, I would first suggest an evaluation by a neurologist to rule out any neurological insult that might be related to both problems. Next, I would recommend an evaluation by a speech-language pathologist (SLP) to document the type, frequency, and severity of the stuttering. It would be important for the neurologist and SLP to know if you ever stuttered before this event, the extent to which there is any stuttering in your extended family, any help you have sought in the past (or was sought by your parents), and several other potentially related issues. I realize this is not a clear answer, but I would not be comfortable speculating further without further information. Ken
From: MD
I started stuttering at age 32. I have seen both neurologist and speech therapist. Could not really tell what the cause of stuttering and family don't recall me stuttering as a child. The stutter has gotten better, but i am left with what the therapist call blocking and hesitation. Sometimes i find myself stuttering when i am tired and unwell.
From: Ken St. Louis
MD, Thanks for the additional information. I assume the neurologist did not find anything that would suggest a neurological insult to cause the headaches, although you did not elaborate on that. You also did not comment on whether or not the headaches are still occurring. All of that information would be important to speculate very much about the nature, cause, or prognosis of your stuttering. Since this conference is signing off today, I suggest you go for a second opinion about your stuttering, preferably from someone who is a specialist in stuttering and could, with the report from your neurologist, consider all of the following causes: neurogenic, psychogenic, or idiopathic (i.e., no known cause). Managing the problem may well need to be in consultation with other appropriate specialists. Again, I realize this is not a clear answer, but you have suggested clues that might lead to several different diagnoses and management plans. Ken
From: Tom Weidig (thestutteringbrain.blogspot.com)
I take up Rosalee Shenker's offer and challenge her to a public debate at the Oxford Dysfluency Conference this coming summer on the efficacy of the Lidcombe treatment .... As she said: "I will not be able to use this forum for ongoing discussion of this issue. Perhaps we can continue to 'talk' in another venue." We need more and better one-to-one debates rather than self-glorifying and rarely challenged monologues by boring key note speakers or experts. And many clinicians need to be challenged on the pseudo-science they are engaging in. They might be nice people, dedicated and competent clinicians, and self-less fighters for people who stutter, but scientific truth doesn't care at all and results from rigorous debates without a social and PC filter, an active knowledge of statistics and fallacies, and an acknowledgement of one's one limitations.
From: ASR
If you had a doctor who stuttered how would that impact you? My earlier post was pertaining to doctors who stutter, and how an SLP would treat that doctor (because of my knowledge is that doctors want to see as many patients as possible, for a financial gain and for the growth of their practice). I am interested now in hearing peoples responses. My response to the question above would be that the stutter would not impact me in anyway because at most it takes a few more seconds for the doctor to give me their knowledge, which I want to hear and apply to myself.
From: Ken St. Louis
ASR, Aside from some of the discussion about stuttering that might be a bit different with a trained physician, I would not treat a doctor any differently at all than anyone else of similar age, abilities, speaking needs, and stuttering problem. Being in a work situation where words are expected at a normal rate is not at all restricted to a busy physician. Ken
From: Allyson Grinfeld - Graduate Student
We are reading Clinical Decision Making in Fluency Disorders by Walter Manning in my class, and I had a question on the name for the therapy technique "fluency shaping". If we do not want to send the message to the child that being fluent is right and stuttering is wrong, how can we bypass this message while using techniques called Fluency Shaping"? It seems that this name suggests that the main goal should be to be fluent, and get rid of their stuttering because stuttering is bad or wrong. Would it be better to label such techniques "Speaking Easier?" Thanks!
From: Ken Logan
Interesting observations. Many clinicians use an "integrated approach" wherein the so-called "fluency shaping" strategies (e.g., regulated articulation rate) are introduced (often first) to develop a person's capacity for smooth speech, and then supplemented with stuttering medication techniques to help the person deal with residual disfluency. Have been through fluency shaping therapy myself back in college and having introduced it to many other people since, I can say that it can be very useful in helping people to speak more smoothly, but as with most things in life, there is no free lunch! Even after extensive practice, it often still requires a fair amount of effort to employ (and may feel 'funny' to use), and even then, a person may still find it difficult to speak smoothly in certain situations no matter how much effort (self-monitoring, self-regulation) they attempt. And, as you point out, there is a risk that a person can attain the capacity to speak fairly smoothly, but yet still feel very apprehensive about speaking...(the "what if it doesn't work and people hear me stutter" scenario). So, I have found that it is usually good to supplement fluency shaping strategies with stuttering modification (stutter easier) approaches so that a person has a "fall back strategy" in those times when, despite one's best efforts, they still stutter. In my experience, one of the bigger challenges associated with stuttering modification techniques is that the speaker may not be very keen on letting other people hear them stutter. In such cases, it helps to introduce activities that are designed to reduce the speaker's sensitivity to stuttering. (My above suggest that the sequence is always 'fluency shaping first, stuttering modification second', but I have used the opposite order in a few cases where clients have balked at the fluency shaping techniques because they felt too unnatural to use.) And, of course, there are people who have found success using either of the two methods in isolation.
From: Ari (Israel)
Dr-Ken Logan - I am so glad to read it! My experience was that because i couldn't speak without the "fluency shaping" targets, I continued avoid situations that i could catch with stuttering, and all the day i thought about my speech ,is it enough to talk fluently. It is so pity that a lot SLP'S treat only one side of the coin, half part solution. I am glad that there are good professionals that treat all the aspects of stuttering, and try to combine the best solution to the patient. — Just today a friend of mine told me "i must talk with my targets, cause i don't have any other option, when i stutter i can't talk". And it remind me the years of struggle not to stutter in any cost, cause in Israel nobody teach "Stuttering Modification".
From: Walt Manning
I had a similar reaction that Ken in his response to your question, which is a good one I think. Somewhere in the text (can't remember where just now) I indicate that clinicians too often indicate, both verbally and non-verbally that fluency is "good" and stuttering is "bad". What is "good" I think, and what we should be more interested in reinforcing, is the speaker's ability to manage their speech, be it forms of fluency or stuttering. Children, for example, begin to feel that they are "the boss of their own mouth." They begin to have a choice about how they are speaking. Once they are desensitized to stuttering and speaking they are to choose how to use their speech mechanism and produce speech in an easier, more efficient, and more enjoyable manner. Parents and spouses and teachers also need to understand that there are different forms of stuttering - some much better than others and that fluency, at the cost of sounding unnatural isn't necessary better than some forms of easy, effortless stuttering.
From: Leigh Johnson ASU-CSD Graduate Student
With so much talk about not being so vague by using the term fluency, is fluency shaping no longer a good intervention technique? Fluency shaping doesn't take the clients feelings and attitudes into consideration. Have we out-grown this form of therapy?
From: Ken St. Louis
Dear Leigh, I don't know what you mean by "With so much talk about not being so vague by using the term fluency." I'll therefore address the second part of your post. "Is fluency shaping no longer a good intervention technique? Fluency shaping doesn't take the clients feelings and attitudes into consideration. Have we out-grown this form of therapy?" I do not believe that fluency shaping should be abandoned. There is considerable research that confirms my own clinical experience that many stutterers improve dramatically with fluency shaping strategies. Some of them are absolutely happy with their results and do not relapse. But some do (as with most strategies). In my experience, when the client is not sufficiently desensitized to stuttering, he or she is more likely to relapse than when desensitization has been accomplished. This is likely for two reasons: First, the person is likely to use the fluency shaping targets to "try not to stutter" rather than "to try to talk in a new way." This is so insidious that, sometimes, a relapse is the only way that this thinking can be clearly identified and addressed. Second, the person is unprepared for the occasional or frequent failures to "stay on target" (and therefore instances of stuttering). Fluency shaping does not, in itself, deal with what to do in these cases. However, IF desensitization is combined with fluency shaping, both of the reasons I mentioned can be mitigated. Generally, unless the client is already well desensitized and simply wants to be more fluent, I add desensitization strategies to the therapy regimen along with fluency shaping. And, though not related to your question, I do the same when I teach stuttering modification. Hope this helps. Ken
From: Don
Isn't the best therapy a combination of Fluency Shaping and Stuttering Modification? And individualized to the needs of each individual client, since no stutterer stutter the same way. What is the best intensive stuttering treatment program out there for adults in your personal opinion, is it the Istar, SSMP, the AIS, or the CamperDown program?
From: Ken St. Louis
Don, Are you a lawyer?
From: Dan
Hi, I'm graduating high school this year, and for the past year or so have been trying to work on addressing my stuttering. (In the past I resorted to avoidance--switching words or leaving a potentially difficult situation.) I guess one good thing I've been able to accomplish is that now, as I reveal my overt stuttering more often, the feelings of intense embarrassment and anxiety that used to be there have diminished quite a bit. To me, that's huge. I guess what bothers me sometimes is the fact that most people who stutter seem to hide it. I look at celebrities and even just regular people who stutter, and most of them are concealing it (sometimes successfully, sometimes not; in fact, I can count four or five covert stutterers in my graduating class, but I'm sure most people don't know that they stutter). I start to think--if so many other people are using avoidance tricks, how should I expect myself to brave the world and stutter overtly, at least for the time being? If so many others can't do it, how can I expect myself to? Not sure how you guys are going to answer this, but then, that's why I'm asking.
From: Lisa LaSalle
You raise a good question, Dan. I have often wondered why, if prevalence is 1%, on a campus of ~ 10,500 students with a University clinic where we provide free services to college students, why we don't see ~ 105 college students who stutter. Surely the factors are covert stuttering, acceptance and not looking for help about one's stutering, etc. Perhaps it is also lack of good PR about our university clinic and what we offer, even tho my students will set up an info booth in the student center around National Stuttering Awareness Week and International Stuttering Awareness Day. Another set of factors probably surround the stigma of stuttering openly, so good for you for overcoming that in your own way. A follow-up question of you is, how are you able to "count four or five covert stutterers in your graduating class"? That is, how do you know that they are covert stutterers, and have you ever brought it up with any of them? Obviously this would be harder to do with the celebs you mention :)
From: Kevin Eldridge
Dan, It's great to hear that you are able to stutter more openly at school and that the intense feelings of anxiety and embarrassment are decreasing. When I was in HS I didn't have the guts to to that. Maybe the other people you mention are not as willing to face their own fears. It does suck though! I mean if when I was in HS there were other people who also stuttered, it would have made stuttering that so much easier for me. So to know there are other people who stutter in you school, but that they are hiding, must be tough. I guess I'd just say don't stop now. You are doing something that is so incredibly hard to do. If the kids in your school knew how frightening it is to talk, they would be so impressed with the fact you are facing your fears and communicating. Hey.. they may not know it, but I do! And I'm impressed in a BIG WAY!
From: David Shapiro
Hi Dan, You really do express yourself well. I think the point is that it always is hard to interpret what is going on inside of another person. Some people are more comfortable stuttering openly. Some become more confident using fluency facilitating controls. The point is that you are doing what seems right for you. You probably know that a speech-language pathologist can help guide you in this process. That you are experiencing a reduction in embarrassment and anxiety indeed is huge. Success can be measured in many ways. Reduction in negative feelings is an important marker for you. I'm in the Czech Republic now for events related to ISAD. In addition to taking part in different types of treatment, I am learning from others who are engaged in music, art, drama, exercise, and more to become more comfortable being who they are and expressing themselves in varied ways. Keep up the good work and thanks for sharing. David
From: John Tetnowski
Dan, You may also want to talk with some individuals who have gone through the same experiences that you have. There is a "covert stuttering" group available through Yahoo groups. Check it out. John Tetnowski
From: sara
Is there any information on dementia and other progressive cognitive impairments and the recurrence of stuttering after a period of recovery throughout life? Or, alternatively, the reduction of stuttering as dementia sets in. I'm just curious to know if it is more or less likely to occur, and what treatments might be warranted in this situation.
From: Ken St. Louis
Sara, I'm not aware of any literature specifically devoted to dementia and stuttering, although there are no doubt case studies out there where these conditions are related. And no doubt experienced clinicians have seen such cases. My guess is that either COULD happen: stuttering returning (or even starting for the first time) after the onset of dementia or existing stuttering reducing or remitting after the onset of dementia. Others on this esteemed panel may know of research in this area and, if so, hopefully will chime in. Ken
From: Mike
I always thought it was weird/strange the emphasis on fluency in the clinic (and stuttering performance is always 98% of the time measured inside a clinical room) and the clinicians' reluctance to do any therapy outside the clinic...Because inside the clinic, it is not realistic. Often, the clinician will give out homework assignments and tell the client to use the "technique" outside on the telephone, while doing a presentation, or use it during a job interview. Easier said than done... This is like telling someone with a limp training for a marathon or 10k race to just train inside the gym and never run outside. As long as the stutterer is running fine inside the gym on a treadmill using the "new technique" everything is rosy...if the client fails, then he/she is not using his/her technique that was taught... Many people who stutter, their stuttering can vary from situation to situation. Another problem is that many people who stutter stutter way less when inside the clinic, 1 on 1 with a clinician... How come student clinicians are not trained to conduct therapy outside the clinic? Does therapy outside the clinic (called transfer activities) make sense? Sure, a stuttering treatment program usually incorporate some transfer activities towards the end, but why not start from the very beginning. Why not do therapy 50% inside the clinic and 50% outside the clinic. My opinion is that fluency/no stuttering inside the clinic is Useless unless the person who stutters is able to stutter less outside in real world situations. So measurements of stuttering treatment efficacy should be measured in real world situations and not in the clinic or videotaped in the clinic. Impromptu telephone calls are good...but that is just one way to reliably measure treatment efficiacy. And then what about the Hawthorne Effect? I really think speech therapists need to do a better job transferring the skill or the technique to real world job interviews, graded presentations. And please less focus on fluency inside the clinic, because the clinical room is not realistic. Killing your enemy in your dreams is meaningless just like reducing your stuttering inside the clinical room is meaningless. Often, the client feels guilty and the clinician is frustrated....how come (you are/I am) fluent in the clinic, but stutter so much when I leave the clinic...it is all my fault!!!
From: Ken St. Louis
Hi Mike, I liked your post. This has always been one of my pet peeves as well. Aside from experiencing some initial relief and confidence building, what does the client ultimately care if he or she can come and talk to the SLP in the clinic with perfect fluency? Yes, a great deal of therapy must take place where stuttering occurs: in the real world. Why don't clinicians spend more of their time outside with their clients? I'm sure there are as many reasons as there are clinicians and clients, but here are a few. (1) Most speech therapy (with other disorders) does not need to occur so much outside the clinic room. The speech and language problems are learned, like long division maybe, and then automatically transfer to other situations quite readily. (2)If a clinician is on a tight schedule with lots of other clients, then it might take too much time to go outside. And if the client were paying by the hour, the cost would probably be 1 1/2 times higher with this addition. This is not unlike the fact that very few physicians now make house calls, something that was quite common two generations ago. (3) Most clinicians I know simply do not want to leave their clinic environment. They simply understand their role to be there--not on the street, on the playground, or on the job. (4) Most clinicians, as you indicated, are not trained in the view that taking a stuttering client into the real world is essential. Most see it as something nice but not required. (5) Some clinicians are lazy. Need I say more about that? (6) Many clinicians, like Roger Ingham wrote many year ago, "Train and hope" for transfer and maintenance rather than building in those components from the beginning. I agree that transfer should begin as soon as a client learns something. After that, the setting should be changed, even if talking from the other side of the table or without any chairs in the room. With this approach, transfer and maintenance are not left to chance. I hope this helps. Ken
From: Walt Manning
Mike - you have it right and I think any experienced clinician would agree with you. There are instances where clinicians - often for legal reasons - are not allowed to leave the school grounds or the clinic and do walking-talking therapy or have a conversation while driving a car but, as you say, that is where practicing behavioral techniques is really meaningful. Rolling a kayak in the safety of a pool or a lake - even when you do it 100 times in succession - doesn't count for much. Doing it in whitewater where there is real time pressure and even some danger and certainly real penalty for failure is the only place it really counts. So, to the extent one can, conducting therapy on the streets, in stores, malls, and restaurants is where as much therapy as possible should be take place. Of course, even without the clinician present (which I found often made it easier for me due to the understanding and support provided)the speaker also has to be determined to decrease patterns of avoidance, increase risk-taking, and consistently practice in daily speaking situations on their own in order to become proficient.
From: Ari (Israel)
Mike-great question! I think that a lot of fluent SLP's don't understand the stuttering experience. I talked with several SLP'S that work mostly with stutterers (in Israel) almost no-one understood what i am talking about. When the "experts" don't understand what you are going through , when SLP say in a stuttering convention that almost all her clients talk fluently after her treatment, what you can expect? For me the real problem is that there are so few professionals that understand stuttering!
From: Ellen-Marie Silverman
Hello, Mike. It is possible you may find the paper I wrote, Stuttering, Shenpa, and Me for the 2005 ISAD Conference helpful. It can be accessed through the Stuttering Homepage as can any other paper ever presented at an ISAD Conference. In Stuttering, Shenpa, and Me, I wrote briefly about my experience working with the shenpa of my stuttering. Shenpa is a Tibetan term for creating problems for ourselves by doing things to avoid what we dislike that make us even more unhappy, such as drinking to access to avoid dealing with a rough spot at work or telling a lie to avoid confrontation with a partner that, then, gets exposed. You get the picture. Well, by doing shenpa work, which is a form of mindfulness meditation, we learn to stay with uncomfortable sensations, such as muscular tension, and strong emotions, such as anger and fear. As we learn to do that, we see how we can apply them to stuttering. Then, for the practice, to be truly helpful, we need to do just that --- apply them to stuttering. For me, learning to relate skillfully to the emotions of fear and anger had direct benefits to speaking with greater ease. I hope this has given you some useful direction.
From: Kevin Eldridge
Mike, Like the others said, you bring up a great point. I recall (as probably other SLPs on this forum) the exact thing you are talking about. I remember being able to speak perfectly with my clinician or others at the hospital, but stuttering when I wanted to get gas for the drive home. That is why some of us make sure we are having as much treatment outside the clinic room as in it. Tomorrow I will meet a client at the local junior college he attends. We arranged for a classroom for our session since that is where he has problems. There ARE SLPs who get this. I recommend that you (and any other PWS) interview SLPs in your area and try to find one that will see you in natural settings too. With the advent of teletherapy, if you can't find a therapist in your local area, look for one that can Skype you. You could be at work, in a Starbucks, at school, etc. YOU GET IT! Find someone to work with that GETS IT too. Good luck. I'd love to hear how it works out.
From: Ken Logan
You're exactly right that speaking in the clinic can be extremely different from speaking out of the clinic. I've seen this many times in my role as a clinician and I experienced it many times (in spades!) when I was in fluency therapy years ago. I just wanted to add a few thoughts to the good points that all of you have made so far: (1) I've done a fair amount of therapy activities where I accompany a person who stutters out to real world sites. One main benefit of these activities, I think, is that it allows the clinician to see, first hand, the situational dynamics that affect the person's ability to manage stuttering. Such information can be helpful in tweaking whatever implementation plan is already in place so that the client has a better chance of succeeding. Another benefit of these activities is that they provide an opportunity for the clinician to model the use of a particular behavior. I think it's important for clients to see models of real live people doing whatever fluency management strategy they are trying to implement. ("It CAN be done...here's what it looks like".) As the others have pointed, it can be logistically difficult for clinicians to do these real world activities in some work settings. So, variations of this include: (a) doing the modeling during telephone calls or (b) having a client to go out into real settings with another client, to try new skills and support and encourage one another in the process. (2) I've found that another big component of successful 'transfer of fluency skills' is setting realistic (i.e., incremental) goals. I've seen the following happen many times (and experienced it to some extent myself when I was in fluency therapy): the client is able to speak with little or no stuttering in clinic and then wants to speak that EXACT same way beyond the clinic. It is a pretty tall order (it's a little like: would a quarterback be expected to throw passes with the same accuracy in front of 90,000 screaming fans and a tough defense as he does in practice with no defenders on the field?). It is much more realistic and productive, I think, to set very modest speech goals as one attempts to implement newly learned skills in real situations. For example,' I will use the 'cancellation' technique on ONE word during my 5-minute conversation with the eye doctor.' A goal like that is very realistic and, if met, offers the client a 'toehold' on gradually changing speech in that situation. Incremental goals often don't sit well with clients (I know they didn't sit well with me!) because it means that you are still doing some stuttering in front of someone else, and many times, people are very reluctant to do that. (This gets into attitudes about stuttering, risk taking, and so forth. Sooner or later these issues have to be dealt with, though). Anyway, the main point is that change usually occurs gradually, and as with fitness training, weight loss, etc., it is requires lots of work. There lot's more to say about this, but I've probably said enough already! Thanks for the interesting post.
From: Ed Feuer
Mike, you have touched upon the very heart of the profession's failings in the treatment of stuttering. I am heartened to see some SLPs acknowledging the problem. I call it clinic room fraud. Here's basically what's happening: The practitioner gets a stuttering client relaxed in the clinic room, greatly reducing dysfluencies. This involves complete emphasis on speech production by the exclusion of factors causing communicative stress via the practitioner's total control of the environment (the clinic room). All signal, no noise. (As such it amounts to a parlour trick and that's what renowned skeptic/debunker James Randi would likely characterize what's going on if he ever turned his attention to claims of success based on clinic room fluency.) The practitioner then gives the client a "technique." The client leaves the clinic room for the real world and falls flat on his or her face. The client reports that to the practitioner back in the clinic room. The client is told: "Oh, you're just not working." The practitioner then collects from the bill-payer. Meanwhile, what's needed is known and has been known for many years. It's not secret knowledge found beyond the seas or the far side of the moon. What's needed is thorough, genuine, systematic (with hierarchies), in vivo, real-world desensitization ' outside the clinic room. Charles Van Riper, in his classic, The Treatment of Stuttering, offers a pretty good guide in his chapter entitled Desensitization: The Reduction of Negative Emotion. Trouble is, the full regime of what's described there has never been done. Probably not even by Van Riper. Why? Because it's just way, way too much for the individual SLP in terms of both time and knowledge. One area in which I see hope is the inclusion of "multidisciplinary interaction" in the professional issues category of ASHA's Division 4, Fluency and Fluency Disorders group. (www.asha.org/members/divs/div_4.htm). To this PWS and non-SLP, that means multidisciplinary interaction with, and involvement of, experts outside the SLP profession in a treatment team, as needed ' in this case psychologists with specialty in desensitization. What does multidisciplinary interaction mean to the experts here in general, and specifically relating to desensitization? Cordially, Ed. edfeuer@mts.net
From: Carly
Hi, I am currently in a masters program for speech-language pathology in New York. I am learning about stuttering in one of my classes, and have a quick question. What fluency strategies that are taught in therapy do you find work the best outside therapy? Do you find it difficult for your clients to use strategies they learn in therapy in the real world? Also, say a client wants to be more fluent, and speak at a fast rate, is this possible? Can you increase fluency and give the client the ability to increase their rate? If so, how? Thank you for your time! Carly
From: Graham Schenck
Hey Carly, I am working on my M.S. in speech pathology at Illinois State University, and I am also a person who stutters. Determining effective fluency generating techniques that work outside of therapy depends totally on the individual client. I took 4 years of therapy before beginning my undergraduate degree, and my therapist and I used a Van Riper-esque behavioral approach to focus on identification of disfluencies, desensitization to the negative stigma of stuttering, modification techniques, and eventually long-term maintenance of learned techniques. This type of therapy was particularly effective for me, but there is simply too much variability in stuttering treatment overall to advocate for one particular technique or intervention over another. If you ever have the opportunity to work with a fluency client in the future (particularly adolescents or adults), you should focus on building a solid rapport initially, and ensure that your client trusts you before you begin actual therapy. You want to learn as much as you can about your client (i.e. feared situations, difficult sounds, etc.) so that you can construct your therapy approach based on their needs. To address your question on rate of speech and fluency, most stuttering therapy focuses on the client using a slower rate than usual to produce fluent speech. Using a faster rate of speech puts more pressure on the speaker, and also stresses the muscles of respiration and articulation/phonation (especially if the client does not have proper breath support). Speaking at a faster rate also requires faster cognitive processing, and clients who are consciously thinking about modifying all the time will generally struggle to do so effectively.
From: MB
I am currently taking a fluency class for my Masters in Speech Pathology at New York University. We have discussed ways to confront the problem, how to evaluate the fluency disorder, and how to provide the correct therapy based on the individual's feelings and strategies. I understand that in order to provide effective therapy to someone who stutters, there must first be a clinician-client relationship built on equality, trust, honesty, etc. My question is addressed toward any SLP or professional and is as follows: Say there is a school-aged kid or teenager who severely stutters and is comfortable with it BUT comes to therapy only because their parents/guardian thinks its best for them? If so, what do you do in this situation? I would assume it is difficult for an SLP to form a good relationship with this client (since he/she doesn't want to be in therapy) and to motivate them, but what if this client was severely dysfluent in all situations?
From: John Tetnowski
Dear MB, I have seen this happen in several situations. In most of these situations, the client has been in therapy for quite some time and has made the decision that they don't want to continue any longer. I believe that when teens or older children have no interest in change, it is pretty hard to force them. What has worked well for me is to convene a meeting with the child and the parents. I let them know that I would be willing to support the child's decision to not attend therapy, as long as they come to a monthly self-help/support group meeting. In that way, the child can at least be connected to a helping situation and can begin formal therapy (or choose not to) whenever they make it their own decision. Quite often, they ask to reinstitute therapy on their own, and often do better because of the exposure to other group members, and because of it being their own personal choice. Thanks for the question.
From: melissa
I have heard that sensitivity to specific foods may affect stuttering. Has there been any research on the correlation between stuttering and diet? Melissa
From: Lynne Shields
Melissa, There is an article by Card (1939) where he attempted to connect food allergies to stuttering. His methods were questionable, and he did not actually attempt an elimination diet to determine whether or not dietary modification would impact stuttering. In another article, Hale (1942) suggests that thiamin supplements may reduce stuttering in children. He reports on a preliminary study in which a group of 2-5 year olds who stuttered were given thiamin supplements for a period of one month. He does not report on the number of children who participated. Results included a reported reduction in stuttering for some of the children, and he concludes that this warrants further study. However, he did not take into account that some of the children might have simply stopped stuttering without the supplement (spontaneous remission). I could not find any follow up studies, so I would assume that any follow up studies did not show an effect. So, I'd conclude from at least this sample of studies that the evidence is slim to none to support food allergies or dietary changes as a treatment for stuttering.
From: Robert Conard
Throughout my schooling, I have been taught that most children spontaneously grow out of their stuttering. My question is why an SLP would provide fluency therapy to a child? Wouldn't bringing the stuttering out in the open and making them aware of it cause them to become more self-conscience of the stutter, making it become more automatic, therefore causing children to persist in stuttering past their youth? Have there been any studies done to see if there are fewer children who persist in stuttering who did not receive therapy versus children who persist that did receive therapy?
From: John Tetnowski
Robert, There is some very good research to address your questions and concerns. Some of the best research on this area of course comes from the work of Ehud Yairi and his colleagues. They have carefully studied and outlined what the predictive factors are for whether children are likely to recover from stuttering or whether it will persist. Some of these factors include clinician-measured variables, with the most important one being a "weighted stuttering-like disfluency" measure. How this changes over time is highly predictable. Other factors including gender, family history, type of disfluency also have fairly strong predictive value. I think that there is some very good research out there to help us make these decisions. It is not 100% reliable, but it is way better than making uninformed guesses. By the way, much of Yairi's data is summarized in his two recent books, Stuttering Foundatiosn and Clinical Applications (2011), and Early Childhood Stuttering (2005). Thanks for the question, John T.
From: Mary Dunleavy, New York
I am curious to know, does a person who stutters (or a parent looking for a SLP for their child) prefer a SLP that has (had) a fluency disorder or a SLP without. Do people have preferences or sentiments about this? Was it a factor when determining what SLP to get therapy from?
From: Lynne Shields
Mary, I (as an SLP who does not stutter) have never been asked about this issue when I am contacted by either adults or parents. Since I do not stutter, I encourage clients that work with me to meet other people who stutter through support group meetings, group clinic sessions, and electronically. Regarding the latter, I've had clients join in on chat rooms and blogs with others who stutter to share stories. All the best, Lynne
From: Joseph Nsubuga, Easy Speak Association, Uganda
Oh Judith it's you again for this wonderful effort!!! I am so happy and i don't have the best words to express our appreciation for all that you are doing to the global stutterers betterment!!! May you and your team live to see a world free of stuttering!
From: Judy Kuster
The live, threaded discussion part of the 2010 ISAD online conference is now closed. The conference papers and responses made during the conference will remain online. Thank you for stopping by. Judy Kuster