The Professor/Researcher is IN — 2004

Click here to read about the professors and researchers taking part in this discussion.
Conversations with both are included on this page, professors first.

Index

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Discussions with professors

 

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"recovered child"

From: Sarah
If a very young child has "recovered" from stuttering, what is the likelihood of it returning at a later age? adolescence?

From: Lynne Shields
Sarah, Could you provide us with more information. For example, was the child truly stuttering, or was there a likelihood that the disfluencies were developmentally normal? How long did the child show the stuttering behavior? And, how old is the child now, and how long has it been since the disfluencies subsided? It is difficult to make predications about future speech, but perhaps some clarification of the above issues will help us give you helpful feedback.

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Head trauma and stuttering

From: Nancy (wilmaflintstone10@yahoo.com)

I was dropped as a 6 month old baby, and my head apparently took most of the impact. I have, what I would rate, a severe stutter. I have also had a number of other head injuries throughout my childhood. Could trauma to the brain be linked to stuttering?

From: Ken St. Louis
Dear Nancy, Sometimes the shortest questions are the hardest to answer. Honestly, I don't know if your stuttering is related to your head trauma or not. I am inclined to suspect that they are not related for the following reason. In general, there has not been a strong link between head trauma and stuttering in past literature, although case studies of stuttering symptoms following head trauma do exist. These rare cases are usually referred to as neurogenic stuttering. Since your first trauma occurred at the age of 6 months, it would be impossible to determine whether or not the stuttering began after the trauma, an important factor in diagnosing neurogenic stuttering in individuals who had previous experienced fluent speech. I find myself wondering about the "number of other head injuries" you refer to. Did your stuttering begin after one of these? How severe were they? How did your stuttering evolve into its severe form? Have you had therapy for your stuttering? How effective was it? Without answers to these and other questions, it is not possible for me to be any more specific. Nevertheless, I hope this provides you with some useful information.

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Our Five Year Old Boy

From: arrowfuentes
Our five year old son (in kindergarten) had some episodes of shuttering which began at age three and got progressively worse. During his 4th year he had an episode which lasted a few weeks and was very upsetting for him and us. The shuttering eventually subsided, and we began seeking the help of a LSP who recommended a twelve week treatment cycle. We also had his public school speech therapist evaluate him, she did not recommend immediate therapy as his stuttering had subsided. He has had approximately four private sessions and as a family we have benefitted from the sessions and have made some adjustments at home. We are now confused as to whether we should continue with the expensive private sessions or not. Please advise.

From: Dick Mallard
Can you provide additional information about the twelve week treatment cycle you mention? For example, is this a twelve week intensive program or a series of twelve individual sessions?

From: arrowfuentes
Intensive treatment versus individual treatment sessions...I'm not sure I understand the difference. Our son has been going to one hour individual treatment sessions in which the therapists reads to him very, very slowly and then asks him questions about the stories....he is encouraged to speak slowly using "Fish Talk"...she issues him an imaginary speeding ticket if he speaks too quickly....we speak slowly in the household environment and follow all of the advice of the therapist.

From: Dick Mallard
Intensive therapy is where you attend sessions daily for a relatively short period of time. Intensive programs last anywhere from a week to more than three weeks. The client is in therapy daily for several hours per day. Some programs have the client working all day and even into the evening. I take it you are talking about non-intensive work where you meet on a weekly or biweekly basis. Is this the twelve session program that you mentioned?

From: arrowfuentes
Yes, our son has been recommended to attend a 12 week program....his stuttering has vanished almost 98 percent, although he occasionally repeats the first syllable of a word.... "I, I, I, I want to go out and play" My belief is that this normal language development, and when a five year is excited or tired they will repeat syllables. The crux of my concern is weather to continue treatment as per the recommendation of the LSP or not get treatment now as per the recommendation of the public school speech therapist....We feel we should do EVERYTHING possile now as opposed to waiting....any opinions?

From: Dick Mallard
I certainly understand your concern. My advice is to find a Board Recognized Fluency Specialist and follow his/her advice. There are many variables to consider in making your decision. You need someone with experience in childhood fluency problems to guide you.

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my son

From:
my son is age six. We do Lidcombe therapy. Was at 21% now at 2% for a long time. Is this usual? Will stay like this forever? Do a different type? He is okay?

From: Howie Schwartz
What feedback have you received from the clinician conducting the Lidcombe program? In my recent limited experience conducting Lidcombe therapy I have found that as the child's speech improves, parents often reduce the frequency with which they provide positive feedback. On some occasions the parents have focused more on corrections and did not provide enough positive feedback. I don't think it's unusual for a child to plateau but I also think you need to make sure you are doing the same things you did to help your child get from the high frequency of stuttering to where he is today.

From:
we still do the feedback. He say continue. I getting tired.

From: Howie Schwartz
The goal of the parents working with the child at home is to find an activity that the child enjoys doing so you can have the opportunity to reward his fluent speech. These sessions are not set up as speech sessions but rather play time with mom and dad. The parent has to work to find opportunities to reward fluent speech so the child will want to produce more fluent speech than stuttered speech. In addition, parents are encouraged to provide rewards throughout the day when the child is fluent. Corrections are provided for stuttering but only at a rate of five positive to one correction. The speech language pathologist should be helping you to set up the program at home.

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Where do I go from here??

From: Dori
Hello all, thank you for participating in this conference! This is the Dori that wrote "What I Wished I Had Known." Over the past several months, Eli has started to take on some "secondary" behaviors which are making it even more difficult to understand his speech. He is turning and twisting his head and making sort of a gurgling noises as he speaks. He is not wanting to go back into therapy at this time (we just quit about six weeks ago after three months with a therapist who had no experience and little knowledge with stuttering. All of these behaviors surfaced during and since that experience.) He gets along pretty well with his friends (we homeschool) so fortunately we don't have the teasing/bulling issue to deal with. It's hard to get an eight-year old to really express how he feels, but I know it is frustrating to him. I'm torn between concern for the negative progression his stuttering is taking, and just wanting to let him be and enjoy him for who he is. Of the five therapists we've seen, only one was really qualified, and she is 45 minutes away. So that brings on a whole set of questions�. Is it helpful to take him to therapy if he doesn't want to go? Do I disrupt our lives (he also has two brothers) and call that much attention to this by dedicating 3-hours drive time and 1 hour of therapy each week to the issue? What type of therapy would be most appropriate at this time? I don't believe an eight-year old kid has the capacity to dedicate the effort necessary to integrate fluency tools (even stuttering modification tools) into his speech the way a teen or adult might have. I could just go on and on, but I'll throw it your way for the moment. HELP!

From: Doug Cross
Dori, There are a couple of issues to consider. First is that your child's problem appears to be progressing in a manner that could significantly impact not only his ability to communicate comfortably but also his self image and comfort interacting with others in the future. This being said, it seems reasonable to encourage you to help your child receive treatment at this time from a qualified fluency therapist. While there are different positive methods of treatment for fluency disorders it is my own opinion that any therapy you decide upon should include a component(s) designed to help your child understand his problem in a way that he can relate to. This should include understanding the mechanics of talking easily as well as the psychological and emotional reactions that often occur as natural responses to feelings of being "stuck" or "out of control". That is, the physical struggle and potential fears associated with developing stuttering can be more easily understood and modified when placed within a context that the child can identify with. It has been my experience that most children are looking for someone who understands what they are going through and shows them that talking does not have to be hard. This might be one reason your child is not thrilled about going back to therapy. Education, understanding, and guidance in problem solving are wonderful motivators for children, regardless of the problems they encounter in life There are several resources available that might help you locate a qualified fluency clinician including the American Speech-Language and Hearing Association and the National Stuttering Foundation. I encourage you to contact either or both to help you locate a therapist you feel comfortable with. Thank you for your question and best to you and your family. Doug Cross

From: Dori
Thank you for your thoughtful response. I agree with all your saying as to what his needs are, but realistically, can any one person (therapist or parent) respond to all these different need levels (mechanics, psychological, emotional). I don't understand how explaining the mechanics of talking and telling a child who stutters that "it doesn't have to be hard" would have a huge impact. It is hard, in a way that we who don't stutter can't ever understand. (Although reading Jesse Loesberg, Marty Jeezer, and others is helpful!) What you're saying looks good on paper, I'm just not sure it translates well into the real world. Or maybe I just need more explanation! I have accessed all the resources you mentioned, even attended the conference in Baltimore this summer with my entire family -- and it was wonderful! But the struggle continues....

From: Lynne Shields
Dori, I will second Doug's suggestions to you, and add that I do believe that a good fluency therapist can, indeed, help your son and family to respond to all of the needs (mechanics, psychological and emotional). You're correct that the therapist cannot do this alone. It takes the work of the child and family to actually make it happen. And, it takes time, since a child's needs change over time as they mature. Understanding the mechanics of talking is important because a child needs to understand the normal talking process and what parts of the body are involved, so he can become aware of what he is doing when he stutters, when he is fluent, and when he is making adjustments to manage stuttering. There is no magic to the speech tools that your son may be learning now or will learn in the future. They are intended to help him modify the way he uses his speech mechanism. An informed consumer is a good consumer. Knowing why one is doing something can help a child see the value of doing the work it takes to master the new skills. You are correct when you say that just telling a child it doesn't have to be hard won't do the trick. Supportive therapy and supportive parents like you can, over time, help a child feel strong enough to try letting the stuttering come out without all the struggle and pushing that seem to be part of his current reaction to his stuttering. It appears, from you description, that he really does not like the stuttering, and he is putting out alot of physical effort to try to stop it, resulting in the secondary characteristics you are now seeing. It is hard to give that up. Therapy can be directed both toward teaching a child management techniques, and learning to understand that when they do stutter, it is O.K. and that they can stutter in a way that involves less struggle and tension. That there is a choice in the matter. A good friend of mine, Susan Short, who is a speech-language pathologist as well as a mother of a young adult son who stutters, told me long ago that she has worked hard to have a stutter-friendly home. She has always been supportive of her son learning to manage his stuttering, but also works to be sure that her son feels O.K. with stuttering when it happens. I think that is a really important concept for families to think about for themselves. Your concerns about the lengthy drive to a good therapist are real and need to be considered--you do have to think about how it impacts your whole family. Could you possibly consider with this therapist having sessions once every two or three weeks? I have worked successfully with several children for whom weekly sessions are not viable. The parents attended therapy sessions to learn how their child was working on his or her speech, and we worked together to develop reasonable goals for the days between sessions at home, making sure the home times to work on speech were fitting into the family schedule. The therapist can work with you and your son to come up with things that your son is willing to work on regarding his speech. Maybe he doesn't need to focus on management techniques, or speech tools, right now. Maybe he needs some educating about stuttering, information about what other kids think, or to learn how to stutter more easily (without the tension that results in the head turns, etc.). The Stuttering Foundation of America has a new video entitled, "Stuttering: For kids, by kids". I'm ordering a copy for myself. You may want to contact them and get a copy for your son and the whole family to watch. If you don't already own a copy of "Sometimes I just stutter", a short book for kids aged 7-12 about stuttering (also available from the Stuttering Foundation of America), I highly recommend it to you. It is really written for children and can be read as a family. These are a few things that you can do at home, in addition to keeping an open line of communication with your son about his stuttering. I wish you the best as you work out how best to help your son. You are a great mother to him!

From: Doug Cross
Dori, First, let me apologize if my reply appears on the surface to be overly simplistic. Also, Lynne Shield's are thoughtful and very insightful. There is just so much one can accomplish in this type of forum. My answer to your question as to whether a good speech pathologist can incorporate the physical, psychological, and emotional components of stuttering into a treatment program is a definite YES. In fact, to focus solely on the mechanics of speech without incorporating the thoughts, emotions, and reactions patterns we experience naturally under conditions of performance stress (and communication is laden with performance stress) is to ignore the very essence of human behavior and reactions. This applies not only to stuttering, but also to the many behaviors and situations we face in our lifetimes. Perhaps I can draw from a non-speech example to explain. Let�s use the professional golfer who must perform an incredibly complex behavior under conditions of extreme performance demand. This is the same person who has confidently and calmly made the same three-foot putt thousands of times on during practice. Yet when faced when the same three-foot putt to win or loose a tournament everything changes. Perception of time changes, nerves become overly excited, and thoughts of fear and missing cloud the mind. The fear of missing the putt and the consequences that go along with it (or for speech getting stuck on a word in front of a class) actually interferes with the natural smooth mechanics of the putting stroke (or of the natural and smooth movements of speech). The very thoughts associated with performance failure and the consequences associated with failure trigger very natural emotional and physiological reactions that interfere with the ability to carry out the task naturally and smoothly. Sports psychologists are good examples of "therapists" who help individuals learn to maximize fluid movement under conditions of emotional and psychological stress. The stuttering response and stuttering therapy are similar. Some children have speech systems that at least at certain times during their lives are relatively "unstable" which can be caused by any number of factors. This instability in the speech-language processes results in the intermittent episodes of stuttering. These episodes occur more often under conditions of performance stress and perceived demand as well as numerous other issues. These factors are similar to those that undermine almost all fine motor skills, even in the most accomplished performer. Perceiving episodes of speech "failure" (episodes of stuttering or even the fear of stuttering) by the child leads to very natural, although unfortunate response patterns that further interfere and often intensify the problem. The more the child tries to talk without stuttering and thus avoid the real and/or imagined consequences the more involved the response pattern becomes. For some children when mistake-free or stutter-free speech becomes the child's defining goal of talking "success" the psychological demand and stress can increase, further interfering with more natural communication patterns and confidence. While speech and language are certainly complex and unique behaviors the movements, thoughts, and emotional reactions are universal and experienced by all of us throughout our lifetimes. I see the fluency therapist as form of talking coach, a person who teaches, motivates, demonstrates, shapes, supports, and pushes. The end result should be a child (or adult) who can speech as effectively as possible given any limitations in their speech-language system combined with the situation demands. A good therapist should apply basic understanding of human behavior, movement, and reaction patterns to treatment. The therapist can help the child understand that episodes of stuttering might, and probably will occur once in a while but that they are capable of keeping their cool and talking in the most natural and easy way possible given the situation demands at the time. This does not always mean stutter-free speech. Specifically, the therapist can help the child understand how they talk, how talking mistakes (such as disfluencies and stuttering) occur, what to expect in certain conditions, what type of thoughts and adjustments make talking better or worse, and what they can do specifically to talk as easily and naturally as possible, especially under conditions of emotional and psychological stress. Lynne is correct. You are a consumer and should question the treatment philosophy, training, and goals of the therapists just as you would any other service provided. There are great clinicians out there!

From: Dori
Oh, please don't apologize!! I am probably expecting a little much from this type of forum, but it just such a great opportunity, I want to make the most of it!! Thank you again for your lengthy reply and I apologize for taking so long to respond! Been working on getting Eli in on this conference, and that's been fun! I like your analogy on the golfer -- I think an important component of their ability to face the fear and nervousness is that they are highly motivated. Eli, although he's taking on these behaviors that are usually connected with struggle to not stutter, he, at the same time, is going through a stage of being quite proud of his stutter (our trip to Baltimore and Frankie's "Man in the Mirror" had quite an impact!) So his motivation to become more fluent is quite low -- at the same time he's taking on these behaviors most often associated with the struggle to not stutter, which is all so confusing to mom! This conference has been a great opportunity to work on the psychological and emotional aspects. Instead of repeating everything here, you can read my response to Lynn to see how we've been involved and some of Eli's reactions. Thanks again for your thoughtful response, I really appreciate it!

From: Dori
Hi Lynn, sorry it took so long to get back to you! I really appreciate your response! It's interesting, Eli, even though he's taking on behaviors that seem appropriate to trying not to stutter, this is also a time when he seems almost proud of the fact he stutters! Frankie's song (Man in the Mirror) has had a huge impact. He told me the other night that he wouldn't want to not stutter because it's his identity, and he likes it! He said "I'm Eli who stutters, I wouldn't want to be anyone else!" Oh dear...is this good or not so good? I just had to laugh. I gently reminded him that he's also Eli who is a great artist, Eli who is a fun little brother, Eli who loves horses, etc.... Thank you for the suggestion of having sessions every couple of weeks. That might make a lot of sense for our situation. The therapist we liked just started a support group once a month (for the kids) and we've attended once so far. He seemed to like it. We've also been going through some of the papers written for kids, and that's been a great conversation starter. He loved Alan Badmington's paper, and Alan responded very kindly to Eli's reply. Eli was thrilled. Thanks again for your response -- I just might see you in Missouri some time for the intensive workshop you do with your friend Susan Short. We have family there that we enjoy visiting, so that would work well.

From: Lynne Shields
Dori, First, let me say that I finally had the time to read your article, 'what I wish I had known'--wonderful article and thanks for sharing your experiences. You have empowered parents who read it to do all those things you learned along the way over the past five years. I'm so glad to hear that Eli is beginning to feel O.K. as a person who stutters. Of course, that doesn't mean that he actually likes to stutter--which may explain why he is beginning to use some struggle behaviors even as he develops some comfort with being someone who stutters. I can't think of any of my adult clients, no matter how at home they have become with themselves and stuttering, who actually like stuttering when it is happening, if that makes any sense. So, Eli may still be in need of some work addressing the idea of letting the stuttering come out more easily, without trying to push through the words he finds himself stuck on. I'm glad he enjoyed the group session, which may prove to be a wonderful therapeutic experience for him and the family. I would be delighted if you and your family could join us for one of our FRIENDS & Family Day workshops. Our next one is scheduled for March 5, 2005. Feel free to e-mail me at lshields@fontbonne.edu if you would like for me to send you a brochure when we get them printed. I have to repeat what I said in my previous e-mail. YOU ARE A REALLY GOOD MOM! Helping Eli to join in on this conference is a great way to give him a broader exposure to stuttering, helping educate him about stuttering and making him feel a part of a wider community of others who live with stuttering.

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Speech Easy and Fluency Master

From: Don Bates
Do any of you have any experience with the Speech Easy or Fluency Master (especially with Children). I'm the father of a 10 year old boy with severe stuttering.

From: Rick Merson, Ph.D., SLP
I have assessed and fit a number of patients with auditory sidetone including the Fluency Master and the SpeechEasy devices. I fit 30 adults with the Fluency Master in the early 1990's with good results for some and poor for others. I have just completed two years of utilizing the SpeechEasy having assessed 260 persons who stutter and fit 126. The youngest I fit was an 11 year old and it was not tolerated well. In general I believe all pre-teens and younger adolescents (13-16) should seek out traditional forms of therapy. Children have many opportunities to work hard and make good progress with their stuttering in treatment. I will publish my SpeechEasy results this fall having tracked these Users for two years. In general many adults and older adolescents gain some benefit from the SpeechEasy and others do not. It is highly individual. There is much to be learned from auditory sidetone in the treatment of stuttering

From: Dick Mallard
Rick, very nice response. I look forward to your publication.

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Professional Careers

From: Shelly, Chicago
As I consider a professional career, should I expect to be treated differently as a PWS? If so, could you give me suggestions for dealing with that?

From: Ken St. Louis
Dear Shelly, Good question, but not an easy one to answer. It would be like asking, "I am overweight. Will I be treated differently?" The simple answer is "Yes, stuttering typically does affect how you are treated." Having said that, I need to back pedal and say, "It depends." The effect of your stuttering on how others treat you depends, of course, on the symptoms and severity of your stuttering. It also depends a great deal on how you present yourself as a stutterer. If you maintain normal eye contact as you speak, if you can differentiate between normal curiosity about your stuttering and ridicule, if you accept yourself, then most reactions of others are not particularly significant. Finally, I would have to say that the career that you choose will play a role as well. You can find people who stutter as role models in almost every field, but some fields would be hard for many stuttering persons to enter and expect to excel, e.g., air traffic control or radio/TV announcing. There is a great deal of wonderful information available in the archives of STUTT-L on this topic. I would suggest you join the listserv and check out the archives on such topics as interviewing for jobs, dealing with stigma or discrimination, or learning to manage other people's reactions.

From: Judy Kuster
In addition to the great material in the archives on Stutt-L that Ken St. Louis suggested, there are also some additional resources online that you might like to look at - a couple of them are actually on this conference. First of all in the paper Stuttering Didn't Stop There there is a really nice list of "every-day" occupations of people who stutter compiled by Lynda Voight. There is also a nice paper by Chris Roach on Interviewing that might give you some helpful ideas.

From: John Tetnowski
Shelly, I am currently working with (as a professor) a student who stutters and is working towards becoming an SLP. I know that he would be happy to talk to you about his experiences. If you contact me off-line, I will talk to him and ask him to reply directly to you (or if he chooses, to respond to everyone through this discussion.....but it will be his choice).

From: Doug Cross
Shelly, I have had the same experience described by John. The young woman I refer to graduated from our program and is an excellent example of a PWS becoming an outstanding speech-language pathologist.

From: David Shapiro
Hi Shelly, You've asked such a good question. As I read through the other responses to your question, I see that you've received some really good advice. So my thoughts here will be brief, more from the perspective as a person and as a person who stutters than as a professor. Indeed we are treated somewhat differently on the basis of all of our unique characteristics. How we perceive and respond to interaction with others as well reflects our uniqueness. What's more, I don't think that being different or being treated differently is all bad. All of us have something to work on within ourselves. Sometimes I have come to feel fortunate that at least we know what we need to work on! No kidding, we may be treated differently, but every experience we have provides an opportunity to learn about ourself and others. And we learn at least as much from the challenging experiences as we do from the easier ones. Having said that, I am convinced that stuttering does not need to hold you back in any way - socially, educationally, professionally. From my own experiences, I was told far too often by well meaning people that, because of my stuttering, I could not or should not do a number of things I had planned. Every time I heard this, I became more convinced that they were wrong. The ultimate outcome for me was that I became even more motivated to achieve everything I set my mind to. I hope if you experience challenges because of your stuttering that your motivation only increases and that you achieve all of your dreams. Remember that when one says "The sky is the limit," that only reflects the limitations of one's own thinking. Hang in there. Today, there are so many good people who DO understand. As you can see from the responses, you're not alone.

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stuttering as a behavioral problem

From: Tembeik Sylvester
I wish to know if stuttering can be as a result of a change in environment. This question arises because I as a stutterer grow up in two cultural environments. I was born in my mothers village, speaking a different language. When I was six I was transferred to a different village, speaking a different language. Since Cameroon is bilingual, I had to study English and French in addition to the already two languages from my parents. I now believe that my stuttering arises from language differences. Thanks, Tembeik Sylvester,Cameroon

From: Dorvan Breitenfeldt
I agree with Barbara that having to learn several languages as I child is probably not a cause of stuttering. Many children like you who had to learn several languages as a child do not stutter and many of us who learned only one language do stutter. Hope this helps a little. Give my regards to Joseph Lukong as I had the pleasure of working with him summer of 03. Thanks.

From: Barbara Amster
TEMBEIK Although there is no evidence I know of that using more than one language causes stuttering, it is possible that having to learn these additional languages was an extra demand on your capacity for fluency. The environment can have an effect on fluency but would not cause stuttering.

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Vocal cords

From: Michael's Mom
Hi! I saw that there are some studies being conducted about speech fluency and brain communication (similar to dyslexia, only in speech). Are there any studies about vocal cord function -- that the vocal cords are actually getting the right message, but that they end up clacking together too many times for each sound? My Dad, who stuttered, recently had a larynx scope for an asthma issue. The doctor said that this vocal cords showed signs of atrophy, which is caused by malnutrition. Since he is not malnourished, but did stutter all through childhood, would this be the cause of atrophy?

From: John Tetnowski
Dear M, There are many reasons for vocal fold atrophy. It is more likely that atrophy comes from some sort of muscular or neurological condition, particularly those affecting the lower motor neuron (the last connection from the central nervous system to the muscle itself). There are other conditions that could cause the atrophy, but I wonder why the physician specifically talked about "malnutrition". That does seem a bit odd to me. There are some studies that look at the connection of vocal fold function and stuttering (there really are quite a few). I suggest looking at the following article that may help: Title: Common features of fluency-evoking conditions studied in stuttering subjects and controls: an (H2OPET)-O-15 study Author(s): Stager SV, Jeffries KJ, Braun AR Source: JOURNAL OF FLUENCY DISORDERS 28 (4): 319-336 WIN 2003 Another article that looks specifically at the function of the muscles in the larynx is: Title: Activity of intrinsic laryngeal muscles in fluent and disfluent speech Author(s): Smith A, Denny M, Shaffer LA, Kelly EM, Hirano M Source: JOURNAL OF SPEECH AND HEARING RESEARCH 39 (2): 329-348 APR 1996 I think that the real issue here is that stuttering is a multi-dimensional disorder. That is, not all people with vocal fold atrophy (for example, following traumatic injury and atrophy of the muscles that produce voice) will stutter. this is clearly documented. Can vocal fold atrophy add to the likelihood of stuttering????? It is possible, but probably not the primary cause. In conclusion, with most people who stutter, it may be important to find the cause. However, for most people who treat stuttering, eliminating or minimizing the symptoms (whether they be behavioral or affective) is the real key to success. Thanks for the comment. I look forward to more discussion in this area.

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broken words

From: Judy Butler
One of my students very often blocks in the middle of words rather than at the beginning of words. Is this clinically significant?

From: Dorvan Breitenfeldt
Judy, Probably not. Stuttering is stuttering is stuttering where ever it occurs in the word. I would see no reason to treat it any differently than most of us who have the greatest difficulty starting a word. Many of us "regular stutterers" can and do stutter also in the middle of a word and sometimes on every syllable. Isn't stuttering an interesting, exciting human problem to try to understand and work with? Good luck to you with your therapy with this stutterer. I don't really believe there is "luck' in therapy just good hard work for both the stutterer and the clinician.

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starting stuttering

From: Kevin age 9
how do you start stuttering ?

From: Judy Kuster
You ask a really hard question! I'm going to copy the answer that is on the "Just For Kids" page where somebody else asked the same question. What we answered is "Nobody really knows why people start stuttering. Sometimes our speech machines (the parts of our bodies that make speech) don't work the way we want them to. There are many different ideas about why that happens. In fact, there may be different causes for different people. Scientists are working hard to try to figure out why people stutter. What is most important is that stuttering is nobody's fault. It's not your fault or your parents' fault." Thank you for being a part of this conference!

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Our son

From: Sean and Cathy, Texas
Our 4yr old son has been stuttering for one year. He receives therapy for articulation(just met all his goals) at the public school(2hours 1 day weekly) and for dysfluency at the local college(30min.private/1hour group 1day weekly). His stuttering at onset seemed to bother him causing him to put his hand in front of his mouth when speaking, but now his secondary reactions have gone away. His repetitions include syllables and whole words, but mostly the use of fillers especially "eh" which he will repeat many times? He has had only one or two really "bad" days that included a total block and his whole face contorted like it hurt. We have made many lifestyle changes to reduce time demands and stress, etc. and he is doing dramatically better. At what point do I know if this is a normal stage of dysfluency or a long term stuttering problem? Do you continue therapy for a set amount of time? Is there a known correlation between dysfluency and learning disabilities in particular dyslexia?

From: John Tetnowski
Dear Sean and Cathy, You really do ask the million dollar question when you ask whether stuttering will persist, or whether it will go away. There are two competing schools of thought at this time. One school of thought looks to see what signs are present in children who begin to stutter that will predict whether they will recover spontaneously or continue to stutter. The work at the University of Illinois by Yairi and Ambrose seeks specifically to answer this question. They have followed many children over a number of years and still cannot positively answer your question. There are indeed children who have stuttered for over 3 and 4 years that will recover on their own. If we look for key factors that relate to this prediction, the answer is not universally clear. However, their data seems to show that if the stuttering remains constant or gets worse, the likelihood of full recovery from stuttering is less. This group also uses a term called "stuttering-like disfluencies", that refers to the specific types of speech behaviors that are shown in children who stutter. These also show predictive value. On the other side of the debate are a group of researchers from Australia (Onslow, Packman, Harrison). Their data tends to say, get started with stuttering intervention as soon as possible. If the stuttering might go away on its own, that may be OK, but if we intervene, we may eliminate it faster and more efficiently (just as we take an aspirin for a headache.....it may go away on its own, but we take the aspirin to get rid of the headache faster). You see, there is not a positively clear answer. A key is to have your son in therapy by someone who "really" understands stuttering. They should be the ones who help you make your decision.

From: Dori
I was interested in your post, as my son was also treated for articulation at age 4. In retrospect I am convinced it was because the therapist really didn't know how to treat stuttering. I would advise you to try and find a therapist with extensive experience in treating stuttering, preferably one who is "certified" in as a fluency specialist. You might find my paper "What I Wish I had Known" helpful. It's under the "Invited Papers" section.

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Is Stuttering/Cluttering Hereditary?

From: Zeid
I've been stuttering ever since I knew how to speak. I stutter less now than when I was a kid. I'm 26, married and we have a 4-month old daughter. I'm glad to know that there are people who understands what I'm going through. Some people give the 'look' when I keep repeating on a word before completing my sentence. It's frustrating sometimes. But I usually try to take my time when talking with people. Anyway, my question here is if stuttering is hereditary? This is because my father stutters, my grandfather stutters and even my sister stutters too. But the level of stuttering varies from one person to another. My father and grandfather stutter less, but me and my sister stutter a lot. Its even more difficult for me as I'm working. My colleagues sometimes cut me off when I talk because I take too long to say what I want to say. So is there any comprehensive study out there to say that stuttering is hereditary? Out of my three siblings, only two of us stutters.

From: Ken St. Louis
Dear Zeid, Good question. I would use your own situation, stuttering in three successive generations and two out of three siblings who stutter, to say, "Quite definitely, stuttering can be hereditary." Notice that I did not say, "Stuttering *is* hereditary." In many cases, stuttering occurs in families in which no other relatives stutter or ever stuttered. Nevertheless, stuttering far more often occurs in families with other stutterers than in families where no one else stutters/stuttered. There are a number of good research studies in this area, and virtually all of the good ones clearly document the increased likelihood of a person stuttering when parents, grandparents, or siblings stutter. You should also know that there is an interesting relationship between sex and heredity. Although more males than females stutter (about 3:1 among adults, and perhaps closer to 2:1 in young children), there appears to be a stronger hereditary influence in families where females stutter. One suggested reason for this is that, since in general females are more likely to recover from stuttering than males, those who do not may have more of whatever genetic influence promotes stuttering than those who recover. Therefore, when a female, e.g., your sister, has chronic stuttering, we could hypothesize that there is greater hereditary influence in your family than if no females stuttered (or continued to stutter). You also included cluttering in your question topic. Compared to stuttering, there is little published information on cluttering. We suspect, based on some anecdotal data, that cluttering might be as, or more, likely than stuttering to run in families. And stuttering as well as cluttering might be present in the clutterer's relatives. Since we do not have a widely-accepted definition of cluttering, it is impossible to speculate further or to compare across studies. Bottom line..... we cannot know with certainty whether or not cluttering is more or less likely than stuttering to run in families. Finally, you commented on differences in stuttering symptoms among your family members. I don't believe anyone has yet been able to predict with much certainty the specific symptoms potential stuttering relatives are likely to manifest. Individual patterns and experiences are so powerful that it would be extremely difficulty to sort out heredity from environment. Still, I could imagine a series of fascinating studies in this area.

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Working with stuttering in the school

From: L. Miller
I am working with a group of fourth and fifth graders who stutter occasionally in class, but not in therapy. I am wondering what I should work on in therapy. They all do well in therapy and discuss appropriate strategies to use. They also talk about different feelings and things that they believe cause them to stutter. I would appreciate any suggestions for therapy activities or when dismissal is appropriate.

From: Dale Williams
A couple years ago, I co-authored an article with a public school stuttering specialist. He was a great believer in getting the kids out of the therapy room (for the very reason you state--success was easy there but not elsewhere). In fact, he told me that after the first day of therapy, he rarely met them in the assigned room again.

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Client in transition

From: Kristie
I am working with a 19 year old client who seems to be tottering between the phases of acceptance and personal action in regard to his stuttering. He attends therapy regularly but does not seem particularly motivated to do assignments or in clinic tasks asked of him. How should I as a therapist approach this situation without pushing him past the point where therapy can be productive but still get progress out of him?

From: Lynne Shields
Kristi, You may already be doing these things, but a few suggestions that come to mind: 1) ask him what he wants to achieve in therapy, 2) have him set goals based on that, and, 3) have him decide what he will do outside of therapy to achieve those goals. If he does not have any goals, then he may be ready to discontinue therapy at this time. If he is ready to phase out of therapy, you can work together to help him come up with a maintenance plan that suits him. I generally begin by seeing clients every other week and then gradually spread the sessions out over time, keeping in contact with clients for as long as they wish via e-mail or phone after we no longer have regular sessions. I always try to leave the door open, so that the client feels welcome to begin sessions or even come for the occasional refresher session or two on an as-needs basis.

From: John Tetnowski
Kristi, I might also ask the client to start keeping a journal. There are many types of "journaling" that can be done, but a reflection journal that opens up many areas of thought (to the client), such as how they feel about the intervention, etc. can really be a good tool.

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Stuttering and Down Syndrome/MR

From: Catherine, Texas
I am currently working with a student diagnosed with Down Syndrome and mental deficits. He is also exhibiting stuttering behaviors along with some mild concomitant behaviors. I have tried to utilize therapy techniques used with other students in the past with limited success. Do you know of any references that I can utilize to help with therapy techniques or ideas for this student with multiple issues?

From: Ken St. Louis
Dear Catherine, You ask a good question, but a hard question. Whenever there are extenuating circumstances like mental impairments or other coexisting disorders, stuttering treatment is affected. I presented a case study many years ago at our state convention on a mentally impaired stutterer with Down Syndrome. In that case study, we found that perseverence was the key. After years of therapy in our university clinic, when many had given up, including me, the young adult began to make limited progress. I took over the case again and found that he did reasonably well using cancellations and pull-outs. Prior to that, he had received about every combination of contingent management, fluency shaping, desensitization, and stuttering modification you might imagine. He eventually learned to use the strategies, but it took a *long* time. Gene Cooper wrote a chapter in a book I edited in 1986 entitled "The Atypical Stutterer." His chapter was on the "Mentally Retarded Stutterer" wherein he recommended using the Cooper approach (now Cooper and Cooper approach) with this population. This approach combines work with attitudes or feelings with fluency shaping. In the latter case, "fluency initiating gestures" (FIGS) are taught. There may be more recent clinical articles available, but I am not immediately familiar with any. An on-line search may turn up some good sources, however. My advice is to adjust your prognosis and accept success in smaller increments than you might with your other stuttering clients with normal intelligence. And, in spite of the example I provide above, I would first consider teaching a slower, easier speech pattern through a combination of modeling/imitation and contingent management. My answer may not be much help, but it's about the best I can do with the information you provide.

From: Catherine
Ken, Thank you very much for your response. It is true, this is one of my most challenging students; however the knowledge I have gained and will continue to gain is very beneficial.

From: Judy Kuster
A couple additional resources for you in addition to Ken's excellent suggestion: The nature of dysfluency in Down's syndrome, Monica Bray's survey looks at dysfluency in Down's syndrome and at the success or otherwise of different treatment approaches. http://www.stammering.org/downs_survey.html and a brochure on Down Syndrome and Stuttering from the SFA site: http://www.stutteringhelp.org/brochures/br_downs.htm

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Starkweather Stuttering Prevention A MANUAL

From: arrowfuentes@hotmail.com
Can someone please help me find the link to: Starkweather Stuttering Prevention A MANUAL FOR PARENTS?

From: Lynne Shields
There is a paper by Starkweather, Gottwald and Halfond with that title. It is at the following URL: http://www.mnsu.edu/comdis/kuster/Parents/starkweather.html This can also be accessed via the Stuttering Homepage, following the link for stuttering information and clicking on the "parent"

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Van Riper

From: Patricia Metten
Every speech & language therapist who works with people who stutter should have a copy of the book 'The Treatment of Stuttering' by Van Riper. I wanted to order it, but it turned out it wasn't available. Does anybody know how I could get a copy of it?

From: Lynne Shields
Patricia, I agree with you. Van Riper's book is a classic. You might try searching on Amazon.com or Barnes & Noble online for used copies of the book. Best of luck in securing a copy!

From: Judy Kuster
It won't be an entire copy of Van Riper's book, but it will provide a lot of the information in the book for you. The Treatment of Stuttering by Charles Van Riper (1973), Englewood Cliffs: Prentice Hall, pages 203-368. Study notes by Darrell Dodge is online at http://members.aol.com/dmdodge/dw/vriper.htm

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therapy suggestions

From: a. horn
I am a speech therapist (working in a school) with very little experience in fluency. Can you suggest a good source for info on different therapy approaches?

From: Judy Kuster
Realizing the problem and asking for suggestions is the first step. Good for you. Reading lots of material and participating in this online conference is an additional step in the right direction. Seeking someone in your area to help mentor you, is another suggestion. There are people who hold specialty recognition in fluency and fluency disorders. Check and see if there is anyone in your area. They are all listed on: http://www.stutteringspecialists.org/ The SFA, the NSA, and FRIENDS all have excellent materials available at reasonable cost. They also often sponsor CEUs and workshops where you can gain a lot of great information. Check the SFA site for a couple that will be sponsored next summer - http://stuttersfa.org/wkshpapp.htm Watch for other CEUs and workshops near you. I know that Scott Yaruss is involved in presenting several in the next couple of months. I believe one is near Madison, Wisconsin and another in the Twin Cities in Minnesota. Go to ASHA and take some short courses that are offered about stuttering. Watch the programs of your state conference for workshops on stuttering. There is a LOT of information and a LOT of opportunities for you to learn more about how to serve the children in your caseload. I admire someone who asks for help.

From: Barbara Amster
I just wanted to add to Judy's very comprehensive reply that when this conference is over, the Stuttering Homepage, always has a wealth of therapy suggestions and information.

From: Lynne Shields
Judy and Barbara gave you some good resources. I'd also recommend that you take the time to read one or more of the good book on the subject of stuttering intervention. A fairly compact reference that will give you a good background is "Manual of Stuttering Intervention" by Pat Zebrowski and Ellen Kelly (2002) published by Thomson Learning. There are many other great books, but this one will give you good basic coverage of assessment and intervention for stuttering with preschool, school-age, adolescent and adult clients.

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Please Help me , in removing my Stuttering, Sir...

From: Joe
Respected Professors , I am a Dentist, who recently graduated. I have problem with stammering/stuttering. In my school days, people of my fellow would always tease me & also in Classes ,teachers would deliberately ask me to read the lessons, until the whole class laughed wholeheartedly. I suffered various humiliations. My late father had stammering too. None of other family members have, anyway. i think i developed it, in my 6th std. When i went to college of dentistry, there too i had problems especially in my University ORALS, where i really couldn't even open a word at all. Many times, the internal as well as the External examiner, would laugh at me & says that i deliberately made this, to escape from their Questions..?? i have been failed in the Practicals because of this 2 times, even though i got 70% in the theory paper.. Finally ,after all those humiliations, i came out & now am practicing in a small hospital here. Today, i was ready for another shock..i went for an interview to a top notch university hospital here. they initially conducted a test & I was selected ,so the next step 2, interview.. somehow, again i couldn't answer & i was back again to my college days.. the board said that, though my marks were really good in the test & the patients won't be benefitted as i won't be able to open my mouth in emergencies well as other situations. Finally he added u would be a big liability to everyone ,including the hospital & also to my self.. Sir, i don't know what i should do now. Should i stop practice as a Dentist now..should i run away from the society..?? i have never been to a speech therapist....anyway, i am just crying when i am typing this...... i don't know what to do next,, i think i will quit my job & go somewhere... Hope, u can help me sir.. , regarding this... I am from India.. thankyou, for reading this post.. regards , joe

From: Judy Kuster
Joe, I'm sure this is a very upsetting time for you and I am really glad you found this conference and wrote to us. Maybe some of the others will also have some more ideas for you, but I will start by saying that there is support and therapy for people who stutter (stammer) in India. Contact Mr. J. C. Nigam, C/O Fluency Club, in Delhi. I will send you his address and phone number in a private email message if you contact me. Hopefully he will be able to guide you to a speech therapist who will be able to offer you some advice. There are also three people from India listed on http://stuttersfa.org/reflists/ref_indi.htm Even if you do not live close to them, they may know of someone who does. The Stuttering Foundation of America has some books that I would recommend to start learning more about stuttering - Advice to Those Who Stutter and Self-Therapy for the Stutterer. If you email me privately with your mailing list, I will send them to you. There is a mailing list on the internet where people from India also share their ideas and information. The person who started the list made the file of the entire conference. His name is Viren and his group information is online at http://health.groups.yahoo.com/group/IndianPWS/ I know dentists here in the U.S. and also one in Australia who stutter. The one in Australia has written about a project he helped with to help children who stutter. He also wrote a nice article for the online conference a couple of years ago. His name is Mark Irwin and you might want to read about him and about what he wrote at https://web.mnsu.edu/comdis/isad5/papers/irwin.html Good luck, Joe, and I'm glad you wrote.

From: Dorvan Breitenfeldt
As a stutterer, I can completely relate to what you have gone through. I will be happy to discuss the various intensive therapy programs available to you in the USA. on a private basis. I would recommend an intensive program in your situation. Judy Kuster made many excellent suggestions and I support all of them.

From: Vasu Parameswaran
Hi Joe, What you write brings back that sick and hopeless feeling I had when I was in India going thru a similar (though maybe not as traumatic as in your case) situation. This was about 10 years ago when I couldn't get a job in spite of an engineering degree from a top institute. Looking back, although some of the employers were rather mean and unkind, I was not comfortable in my own skin because of my stuttering, and that showed in the interviews. Joe: there is a lot of hope and a lot that can be done. I would suggest that you start with Judy's info, read as much as possible about stuttering and participate in discussions with other people who stutter and especially on the list maintained by Viren Gandhi. An important advice would be to actually meet other people who stutter in your area.

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Telling the child

From: EKapper
I have heard that you should never tell a young child that they stutter, because it may increase their stuttering. However, I have also heard that you should tell the child they stutter, because in most cases they know something is wrong. So when or at what age is it appropriate to tell the child that he or she stutters.

From: Ken St. Louis
This is an ongoing challenge for parents and others when a child begins to stutter. Wendell Johnson believed that it was misdiagnosis normal disfluency that transformed a child's normal disfluencies into stuttering. Parents and others were told to ignore the stuttering and (hopefully) it would go away. His advice followed a tradition of thinking about stuttering as either primary, when the child was unaware of the stuttering, to secondary, when the older child or adult had become aware of stuttering and engaged in tricks or "secondaries" to attempt not to stutter. The rationale was that since most young children are primary stutterers--something we know now is not necessarily true--attention should not be brought to their speech. Johnson did not know that 80% of the children would remit without treatment anyway, so he assumed that his advice to ignore the stuttering was the critical factor in so many recoveries. As I mentioned, we now know that stuttering often does not progress in a uniform way from unawareness to awareness. Awareness of stuttering in children, like awareness of a sore thumb, comes and goes. We also know that a sizeable minority of young stutterers start out quite severe and get better over time, even if they continue to stutter. Additionally, we know about the influence of spontaneous recovery. And finally, we now know about something Starkweather called the "conspiracy of silence." The more something is not mentioned, the more "unmentionable" it becomes. Interestingly, if not talked about, stuttering is something that children as young as the age of 2 or 3 intuitively seem to pretend does not bother them--even when it does. So the best advice I can give to parents and clinicians about mentioning stuttering to young children is as follows. Don't make a constant issue of stuttering but let the child know from time to time--especially after an unusually difficult stutter--that you know he/she is having a hard time. The should not communicate any fear but simple, honest concern. At that time, tell the child that you will listen carefully and that it is OK that he/she sometimes has difficulty getting the words out.

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should therapy be used with fluency devices?

From: Jami Klug
i just wanted to know any of your opinions about the use of therapy with fluency devices. Does it help?

From: Lynne Shields
Jami, I know several SLPs who dispense fluency devices and they provide therapy along with the devise for several reasons. First, it is important to learn how to best use the device once it is purchased. Second, since the device does not cure stuttering, supplemental therapy is useful in helping the client learn modification or fluency-enhancing techniques to assist them in managing their stuttering.

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Stuttering treatment in schools

From: P. Moore
I have one third grade student that I am seeing for stuttering. He very rarely stutters in the therapy room with me and can discuss tech. that he can use ( easy speech, cancellation, ect).I am just not sure what directions that I should take with him. He seems aware that he is stuttering. I would appreciate any activities or suggestions that you might have!

From: Barbara Amster
You may want to consider working on his feelings and attitudes about speaking. One resource is "Facing the Challenge of Treating Stuttering in the Schools", Part 1 and 2 (2002) Volumes 23, edited by Scott Yaruss which is part of the Seminars in Speech and Language, Thieme: New York. It contains useful information especially for the school clinician.

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Stuttering Feedback Device

From: Jen B.
I heard about a new device that people who stutter can place behind their ears (I think) and it gives them speech feedback and somehow cures the stuttering. How does this device work? Is it really as effective as people make it out to be? And do you know how much it costs?

From: Hans-Georg Bosshardt
The electronic devices you are referring to modify the auditory feedback from your own voice. Some of them mask the auditory feedback by loud noise or they delay the temporal feedback by about 1/5 of a second or they shift your voice characteristic so that it appears to be higher lower pitched. We know enough about the effects of these feedback modifications to say that they can have various effects on speech fluency � one of these effects is of course an increase in speech fluency which is observed in many but not all persons who stutter. For some persons these devices create almost complete fluency under all conditions, for others it is only useful under some very few conditions for example of prepared speech or in quiet environments and it can even increase stuttering in some persons. The costs vary between about 1000 and 5000 USD. Before spend this amount of money I recommend that you collect information. In my view Judy Kuster has compiled a highly informative paper. This paper informs in detail about research, and experiences of people who stutter and of therapists and producers of these devices. You may find additional information at the National Stuttering Association: http://www.nsastutter.org/ Stuttering Foundation of America: http://www.stutteringhelp.org/ This site provides a list of producers. On the basis of the presently available evidence I fully agree with Judy Kuster's conclusion: "The bottom line(s) as far as I'm concerned is that these products are not a 'cure' and should not be marketed as such may be beneficial for some people who stutter may be expensive, but some have a partial money-back guarantee there need to be studies done to determine the long-term effectiveness.""

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Employment Question

From: Alan
Are people who stutter covered under the Americans with Disabilities Act? I was also wondering if people who stutter are covered under Titile 8 of the Civil Rights Act of 1964. Also, do you know if the Equal Employment Opportunity Commission recognizes people who stutter in its program. Thank you for your insights and opinions. Alan

From: Judy Kuster
I do not know the precise answer to your questions, but there is information about "Employment Issues" on the Stuttering Home Page at: "Employment Issues" on the Stuttering Home Page. Some of the links you'll find there include STUTTERING AND EMPLOYMENT DISCRIMINATION by William D. Parry Mr. Parry is a lawyer. He is also a person who stutters. Another article you might want to take a look at is STUTTERING, EMPLOYMENT, AND THE AMERICANS WITH DISABILITIES ACT by Tom Kehoe .

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Article 89

From: Alicen Walker
I understand that stuttering is perpetuated by a number of factors but is there specific evidence about the neural synapses physiology and development of stutterers like that of persons with dyslexia? Has there been any PET scans or whatever they might use to test a differentiated neural development from "normal" development in this field?

From: Barbara Amster
Alicen The entire volume 28 (2003) of the Journal of Fluency Disorders was devoted to a discussion of brain imaging research on persistent developmental stuttering and should answer your questions.

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a 3 year old and a 13 year old

From:
I know two different friends with children who stutter. One started stuttering at age 13, is this kind of old to begin? Another has a 3 year old, but the were told it isn't a problem unless it gets above a certain amount. Is a certain amount fine, and above that when to get therapy?

From: Barbara Amster
Although starting to stutter at age 13 is unusual, it does happen. It is very difficult, if not impossible to predict which children will become chronic children who stutter. Some of the research in the field indicates that as many as 80% of children who ever stutter, spontaneously remit. That being said, I don't think that there is any level of stuttering that clearly indicates more or less risk. For more information about this, please see: Yairi, E., Ambrose, N., Paden, E.P., & Throneburg, R.N. (1996). Predictive factors of persistence and recovery: Pathways of childhood stuttering. Journal of Communication Disorders, 29, 51-77. I would suggest that the parents of the three-year-old child contact a certified speech-language pathologist who is Board Recognized in Fluency Disorders. In addition, I would also suggest that they check out the Stuttering Home Page support for parents. I especially like Stuttering Prevention: A Manual For Parents by C. Woodruff Starkweather, Ph.D., Sheryl Ridener Gottwald, Ph.D., and Murray Halfond, Ph.D., Temple University Stuttering Prevention Clinic.

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social misfit

From: sean
hi, i'm a high school senior and i'm doing pretty good in school. i just moved to the U.S from Africa last year and as if that's not bad enough I stutter too. Adjusting to the american way of life has been difficult but i've survived so far. I've not been very happy to be here because it"s been difficult to communicate with the other kids and i've been a little reluctant to talk a lot even in class because i'm scared the kids will make fun of me. I would like some advise on how to deal with school and the best way to handle day to day interaction with high school kids. thanks a lot.

From: Lynne Shields
Dear Sean, Wow! You've got alot to adjust to, with a move to a new culture, being so incredibly far away from your old friends, and perhaps family, too. I commend you on how well you seem to be getting on so far. I can understand your being reluctant to talk, given your uncertainty about stuttering and how the other students will react to you. It might be helpful for you to keep a few things in mind as you think about how to interact. Generally, American high school kids are fascinated by people who come from another country. Since our country is so large, many kids have not interacted with international peers very often. That is probably going to work in your favor with many of your peers at school. Our family hosted an exchange student from Germany last year, and she also stuttered. She was so worried about how people would react to her speech, but she found, happily, that the students were so excited to get to know her, and they went out of their way to make her feel part of the group. It helped that she joined the volleyball team--the rest of the team members really took her into their group. So, you might get involved with some sort of extracurricular activities as a way to meet a group of people. You also might want to consider being open about your stuttering. When our exchange student met new people, she often told them about her stuttering, being quite matter of fact about it--when she got stuck on a word for the first time with a new acquaintance, she'd say something like, 'oh, you may notice that I get stuck on words sometimes. That's because I stutter, but I eventually can get what I want to say out if you will be patient'. She did not find that she was teased, as she expected. If you do get teased by someone, I think it is helpful to have a snappy comeback for them, to show that they have not gotten the best of you. You can think about how you might like to respond to various types of teasing. For example, if someone mimics you, trying to stutter like you do, you might say, in a joking sort of way, 'gee, you don't do that very well. Can I give you some tips?', with a smile on your face. Another response, if you think that a person who laughs when you stutter really may just think YOU are joking around, might be to tell them, 'you know, I really do have a stuttering problem. Sometimes it is hard for me to get through a word'. You can look on the Stuttering Homepage at http://www.mnsu.edu/dept/comdis/kuster/stutter.html There is a link to information "Just for Kids" where there are some examples of ways kids have responded to teasing, some of which are from older kids. You may find some good ideas about ways to respond there. There is also a link entitled "Just for Teens", where you may find some good information, written by other teens like yourself. Thanks for posting your and concerns at this conference. I'll bet there are other teens reading this around the world who have the same concerns that you do. I wish you the best.

From: David Shapiro
Hi Sean, Boy have you asked a good question! From Africa, huh? Where did you used to live? Many years ago, I spent 10 weeks on the west, south, and east coasts of Africa. What a remarkably beautiful continent. I hope you will find in time that the USA is a wonderful place to live too. What a great time we live in today when we can come to feel at home in many different places. I understand that you are dealing with some big challenges right now. My reaction here is more from the perspective of a person and as a person who stutters than as a professor (which I am too). I too have done quite a bit of travel and have had to adjust to new ways of living; in fact, right now I am in the Czech Republic, which is far from my home in North Carolina. Adjusting to cultural and communication differences can be challenging, but ultimately what we experience and how we react to these experiences broadens who are as people. What to do in school? I would suggest to give yourself and others a break. I bet others want to get to know you just as you want to come to know others. All of us feel shyness. Try to talk with others; I bet you will discover some really good friends who appreciate you for the person you are and who will want to learn about your unique characteristics and experiences, just like you will want to learn about theirs and the cultural differences in the states. And there should be a speech-language pathologist in the school, or within the school district, who could be of real help to you. You will find that you don't need to experience this transition alone. We all need one good friend to help us through the rough spots. You will discover that your classmates, teachers, and particularly the SLP may become good friends. I wish you the best. Your classmates are fortunate to have you in their class. Where else can they learn about the beauty of Africa - the people, the wild animals, the food, the clothing, and more. Tell your classmates about the hundreds of zebra running at one time; or the giraffs eating from trees so tall that their heads looked like they were in the clouds. I bet they will think you are making up a story; they probably can't even imagine such beautiful scenery. They can learn this only from you. I wish I could meet you myself. Good luck to you.

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Generalizing

From: Katie
What steps would a SLP go through to help an individual who stutters move through the generalization phase?

From: Lynne Shields
Katie, The most important thing, I believe, is to move therapy out of the clinic room. Go with your client around various locations at school or even outside of school, practicing using the child's favored speech tools. Help the child come up with ways that they want to practice using their tools at home, and help them make these in the form of a do-able contract, that both of you can monitor. Being there for some of those outside situation can be a big help to your client in trying new behaviors in typical situations throughout their daily routine.

From: Dorvan Breitenfeldt
I agree with Lynne's , but would like to add that you should always do the situation first with your stutterer (faking stuttering) before you ask or expect the stutterer to do it. Speaking both as a clinician and stutterer, it is so important that we "take some of the stutterer's pain," If we can do it without distress the stutterer will admire you for it and he will do it much easier.

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When should parents seek help?

From: Ali Walker
When does one know to seek out a SLP? It seems as though many parents are hesitant to seek immediate help for their children who stutter because of the cost and the uncertainty of it all.

From: Ken St. Louis
Dear Ali, Over the years, this has been a question that speech-language pathologists (SLPs) have answered differently. A generation ago, most would have advised parents to simply ignore the stuttering and perhaps given them some handouts about how not to make an issue of stuttering. The rationale was that stuttering would not develop if the child were never made aware of it. Today, we know that advice to ignore stuttering, although not entirely inappropriate advice, does not square with all of the facts. The best estimates of recovery without treatment in preschoolers who start to stutter are as follows. If all cases of stuttering, including those cases in which stuttering lasts only a few weeks or months duration, are considered, 80% will recover without any formal therapy. If only those children who have been stuttering for at least 1 year are considered (excluding the cases of short duration), the "spontaneous" recovery rate drops to 50%. With these figures, two schools of thought about when parents should bring their stuttering children to the attention have emerged. Some suggest waiting for one year or so before seeking therapy, unless the stuttering is getting markedly worse. Others recommend that parents take their child to an SLP as soon as stuttering occurs or is suspected. (Importantly, both approaches assume that the SLP is knowledgeable and competent in the area of childhood stuttering, a situation that unfortunately is far too often not the case.) I subscribe to the latter approach, i.e., seeing children as soon after stuttering onset as possible. Yes, it means that some children may be seen unnecessarily, and there will be some expense involved. Nevertheless, there is little or no solid evidence that good therapy makes children worse and the risk of waiting can be greater. Also, we know that the earlier we can intervene in preschool stuttering, the more likely the child will grow up not even remembering the problem. I should hasten to say that waiting one year for most preschoolers will not necessarily mean that stuttering will become chronic. But is often does mean that parents and others may not get good advice on how to react to the child's stuttering shortly after it begins.

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DAF

From: Elisa Friel
Do you believe that DAF is a successful means of treating stuttering and why or why not?

From: Judy Kuster
Elisa, Your question is very broad and would require a lengthy answer for anyone wishing to support or refute the use of these devices. There is also a lot of debate about these devices at the moment. Until there has been more research into the long-term effectivenss (I know Larry Molt is currently doing a study), and trying to determine who it might work for and who it might not work for, I'm not sure anyone can answer your question.

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Psychotherapy

From: A.R.
Is it uncommon for those who stutter to need psychotherapy to help with their emotions and feelings that are often a result of stuttering?

From: Judy Kuster
For some people who stutter, there is a big part of the problem that lies below the surface. Sheehan described stuttering like an iceberg. What you see above the surface may be the smallest part of the problem. Many speech-language pathologists have additional training and degrees in counseling and there are required counseling courses in several graduate programs in speech-language pathology. Most SLPs and their clients address issues that are below the surface, as well as the surface behaviors of stuttering. For some people who stutter, a professional counselor is an important part of the team in their path toward recovery. Some may also benefit from working with a psychiatrist who is able to prescribe medication. I know of several people (some who stutter and some who don't) who have found counseling helpful.

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The threaded discussion [with professors] is now closed

From: Judy Kuster
Date: 22 Oct 2004
The live, threaded discussion part of the 2004 ISAD online conference is now closed. The conference paper and responses made here during the conference will remain online. Thank you for stopping by. Judy Kuster

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Discussions with Researchers

Lidcombe research

From: Sarah
I was wondering if the research is complete on the Lidcombe program with a control group. I believe there was something going to be done in New Zealand? If so, where can I find the results?

From: Nan Ratner
I am not aware of a Lidcombe project that involved a traditional control group in print at this time. One may be underway.

From: Ann Packman
Indeed, a randomized controlled trial of the Lidcombe Program has been conducted in New Zealand. The control arm of the trial did not consist of a "no treatment" group; rather, children in that group were free to participate in any other treatments that are offered in New Zealand. My colleagues and I are currently writing up the results for publication, so unfortunately I cannot reveal the findings yet!

From: Ana
I have 5 years old boy. He started stuttering on and off since he was 3. We began therapy with a specialist that recommend 12 weekly sessions. Where can I find information about the different therapeutics techniques available with examples of exercise? We would like to be inform and know about the different techniques that the specialist can apply.

From: Nan Ratner
Ana, I think this question is better asked of the Professor Is In group, which was assembled to provide clinical guidance.

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Chances of Stuttering in children of PWS

From: Viren Gandhi
What is present research saying about chances of stuttering in children of PWS? I remember I read it somewhere it was 8 times more. Is it? Should PWS take any extra care about their children in growing years may be till 5 or 10 years age? Should they look for any sign of stuttering actively? Viren Gandhi, Mumbai, India

From: Dorvan Breitenfeldt
The best research that we seem to have is that there is a slight tendency for stuttering to run in families, but I have no evidence that it is 8 times more likely. There is no history of stuttering in my family and yet I have stuttered since early childhood. Two of my three children stuttered briefly as children but now as adults do not stutter.

From: Ken St. Louis
Hi Viren, Let me add to what Dorvan has written. A very interesting longitudinal study was carried out by Saskia Kloth and her colleagues in The Netherlands. There are several publication on this study, but let me mention an early finding that was reported by Kloth, Janssen, and Kraaimaat in 1992. They had tested and recorded 91 1-2 year-old children. All of these children had one or both parents who stuttered. Of course, none of the children stuttered at that very young age. At 3 years of age, they were tested again, and 20 of the 91 or 22% had begun to stutter. The estimates are very rough, but many experts agree that the lifetime incidence or risk of stuttering is about 5%; yet, it is likely that the combined risk by age 3 is somewhat lower. I would *guess* about 3%. If you divide the 22% by 3%, the Kloth study would generate a factor of 7 times the risk of stuttering compared to the general population. I, too, don't know where the 8% to which you refer is written, and I don't know the age limitations associated the percentage, but the forgoing analysis suggests that it might be reasonably accurate. Others may disagree with me here. If so, I hope they weigh in. This is an important issue.

From: Vasu Parameswaran
Ken, Isn't it true that very young growing children have a much larger incidence of stuttering. The number 25% seems to stick in my head for some reason. My understanding is that most of these children recover and so the incidence rate drops to about 1% in adulthood. In that case, the study you cite seems to not indicate that the incidence of stuttering is more among children of people who stutter. Am I right?

From: Viren Gandhi
I read somewhere it was 8 times and not 8%. Do not recollect where but it could be some SFA or some good source.

From: Viren Gandhi
As Ken mentioned chances more, I just wanted to ask should PWS show extra care for his/her child in growing years? Is there anything PWS should do about this unknown risk? Should he/she look for any signs of it or anything in growing years? Up to how many years one should take extra care?

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The Brain

From: Dori
I am the mom of an 8-year old who stutters (I wrote "What I Wished I Had Known" for this conference.) Several days ago I attended a presentation by Dr. David Walsh (Institute on Media and the Family) who has just written a book on the adolescent brain. It's clear that over the past several years, knowledge of brain activity has soared. My question is has there been any new findings relating to the brain and stuttering that could be read and understood by a layperson? Also, diet is always on my mind as it relates to my eight-year old and his stutter. We tried to go wheat/gluten free (to lower dopamine levels). He felt very deprived, and his stuttering didn't get any better. I've read that sugar can be a factor (if he felt deprived about that wheat/gluten thing, can you imagine how he'll feel about sugar!?)

From: Dale Williams
While it makes sense that sugar could lead to more excitable and less fluent speech, I really haven't found this to be a common problem. I typically ask parents to look for stuttering patterns (e.g., does frequency vary with TV watching, time with siblings, and other factors, including, yes, diet). It's a rare case when diet is reported as a factor.

From: Nathan Lavid
Hello Dori, There are some recent review articles regarding brain activity and stuttering in adults. I've listed two below. Also, I have listed a review article from the Public Library of Science, "What causes stuttering?" that you can access from the Internet. I've written a short book on stuttering for the University Press of Mississippi that has a chapter on the biology of stuttering. I can send you the chapter or a copy of the book if you like. If so, send your contact info to nlavid@nathanlavidmd.com. Best of luck with your book, Nathan Lavid, M.D. Alm P. Stuttering and the basal ganglia circuits: a critical review of possible relations. Journal of Communication Disorders, Volume 37, Issue 4, July-August 2004, Pages 325-369. Ingham R. Brain imaging and stuttering: some reflections on current and future developments. Journal of Fluency Disorders Volume 28, Issue 4, Winter 2003, Pages 411-420. Bucher C. & Sommer M. What causes stuttering? PloS Biology, Volume 2, Issue 2, February 2004, Pages 159-163. http://www.plosbiology.org/archive/1545-7885/2/2/pdf/10.1371_journal.pbio.0020046-S.pdf

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SpeechEasy

From: Kim Radke
I have read and heard conflicting thoughts about the SpeechEasy device. What does any of you think about how well it works and whether or not it helps a lot with enhancing a person's fluency?

From: Vikram Dayalu
The speecheasy device uses Altered Auditory Feedback (AAF) and I would like to focus on the science behind it rather than getting into the specifics of this particular device and the factors related to its prescription. AAF has been extensively investigated in the area of stuttering amelioration. Its use results in an immediate reduction of stuttering moments and the resultant speech output in natural sounding. The speech produced under this feedback condition may still contain some stuttered moments; nevertheless, the dramatic reduction cannot be denied. This reduction in stuttering moments does not require the client to have any previous experience with these effects and very little training is needed to facilitate relatively stutter-free speech. As detailed in several research articles and from my own experience of testing nearly 200 people who stutter under these effects, approximately 80 % of PWS experience some change in their stuttering levels when they compare their speech with and without speaking under these effects. Now, for reasons that we are not fully aware of, some people who stutter are more susceptible to these effects and exhibit a more dramatic effect (sometimes as high as a 90 % decrease in stuttering symptoms). So I would say that the responses (i.e., the reduction of stuttering moments under AAF) are on a continuum. Further, the reduction of stuttering moments under the influences of AAF is robust i.e., these effects do not fade away with prolonged use. This fluent speech can be generalized to more natural speaking environments and speaking tasks (monologues and conversations). Further these effects have been tried out with children who stutter and the results are promising. Finally, I should state that these effects do offer a truly viable treatment option for people who stutter. Yes, an option that can be easily tested. All that needs to be done is to try out these effects and see if these changes in altered feedback reduce stuttering frequency. As the changes are immediate and evident, it is an efficient and economical option that can be exercised by a person who stutters. The decision then rests on the client and the SLP to make a decision pertaining to the specific treatment option that needs to be followed (i.e., either pursue the SpeechEasy Program, a speech retraining program or a combination).

From: Mary Beth Hetherton
you commented that FAF was beneficial across monologue tasks. I recall a few studies below that found no significant change.?? Armson, J, and Stuart, A (1998) and Ingham et al. (1997)

From: Vikram
You are right. These studies did report that FAF was not as powerful during monologue as it was during reading. However, we should all realize that these studies reported the use of FAF with no additional alternations whatsoever. As I mentioned before, not every person who stutters experiences the same change in fluency and there are some who do have problems transferring the fluency from reading to other speaking tasks. Nevertheless, there is some change in fluency that aids in building a treatment plan that is geared towards using the alteration in feedback to further his/her fluent speech in a more natural and effortless manner. This protocol requires the use of some highlighting strategies that have been long used in traditional forms of therapy (I prefer prolongations). These occasional prolongations trigger a more dramatic change in fluency when combined with AAF then when used in isolation. We intend to test and collect data to exemplify this clinical observation in the near future. Please refer to the following abstracts as they add to our current discussion. Kalinowski J, Guntupalli VK, Stuart A, Saltuklaroglu T. (2004). Self-reported efficacy of an ear-level prosthetic device that delivers altered auditory feedback for the management of stuttering. Int J Rehabil Res., 27,167-70. Numerous past efficacy studies in stuttering treatment have typically failed to assess generalization of therapeutic gains across speaking environments over time. The purpose of this study was to use a self-report format to gain insight into the improvements of clients who purchased an all in-the-ear device that provides altered auditory feedback to manage stuttering symptoms across everyday speaking situations. A total of 105 participants (age 7-81 years) returned completed questionnaires that examined seven parameters of stuttering behavior before acquiring the prosthetic device and after using the device with minimal clinical intervention for an average of 6 months. Across each parameter, participants rated a significant (P<0.001) improvement of approximately two units on seven-point scales after beginning to use the prosthetic device. In addition, the device received high overall satisfaction ratings, with a median score of 2.0 on the seven-point scale. Self-report is a 'must' for examining clinical efficacy in a disorder such as stuttering, which is so amenable to 'clinic room fluency' yet highly resistant to long-term amelioration. The data suggest that this device is helping to provide its users with functional, effective and efficient management of stuttering without the need for extended clinical follow-up. Stuart A, Kalinowski J, Rastatter M, Saltuklaroglu T, Dayalu V. 2004Investigations of the impact of altered auditory feedback in-the-ear devices on the speech of people who stutter: initial fitting and 4-month follow-up. Int J Lang Commun Disord., 39, 93-113. BACKGROUND: Self-contained ear-level devices delivering altered auditory feedback (AAF) for the application with those who stutter have only been recently developed. AIMS: The paper examines the first therapeutic application of self-contained ear-level devices in three experiments. The effect of the device on the proportion of stuttered syllables and speech naturalness was investigated following initial fitting and at 4 months post-fitting. METHODS & PROCEDURES: Three experiments were undertaken: In Experiment 1, the effect of a self-contained in-the-ear device delivering AAF was investigated with those who stutter during reading and monologue. Two adolescents and five adults who stuttered read and produced monologue with and without a device fit monaurally. The device provided a frequency shift of +500 Hz in combination with a delayed auditory feedback of 60 ms. Custom-made ITC and CIC devices were fabricated for four adults and four youths in Experiment 2. The effect of group (i.e. youth versus adult), time (i.e. initial fitting versus 4-month follow-up), speech task (i.e. reading versus monologue), and device (i.e. present versus absent) on stuttering rate was examined. In Experiment 3, 15 naïve listeners rated the speech naturalness of speech produced by the participants in Experiment 2. Speech samples from six conditions were rated: reading and monologue without the device at the initial visit, reading and monologue with the device at the initial visit, and reading and monologue with the device at 4 months. OUTCOMES & RESULTS: In Experiment 1, the proportion of stuttered syllables was significantly (p=0.011) reduced by approximately 90% during reading and 67% during monologue with the device relative to no device. Only a significant main effect of device (p=0.0028) was found in Experiment 2. That is, stuttering rate was significantly reduced with the device in place regardless of speech task or group and remained so 4 months later. In Experiment 3, speech samples generated while wearing the device were judged to be more natural sounding than those without the device (p<0.0001) for reading and monologue with both adults and youths. There was no significant difference between the mean naturalness ratings of speech samples generated during the initial fitting with the device relative to that at 4 months with the device (p>0.05) in all cases except with the youths while engaged in monologue. For that condition, raters judged the speech produced at the initial fitting as more natural. CONCLUSIONS: These findings support the notion that a self-contained in-the-ear device delivering AAF assists those who stutter. With the device in place, stuttering is reduced and speech produced is judged to be more natural than with out the device.

From: Ann Packman
I would like to add to Vikram's about the use of AAF. I agree with him that there is indeed considerable experimental research indicating that AAF can have an immediate and sometimes dramatic impact on stuttering. As far as I know, however, AAF has not been evaluated in a clinical trial. This type of research assesses the effects of a treatment in representative real-life situations. Such research can show how many people are helped in everyday life by a treatment, to what extent they are helped, and whether certain types and/or levels of severity of the problem at hand respond better than others. In addition, client tolerance for a treatment can be established. This information would be most helpful for people who stutter, and for clinicians, in considering AAF as a treatment option.

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maintenance

From: Diane
I am the mother of a CWS. My child first had therapy that focused mostly on slowing down her speech and other fluency shaping techniques(which helped, but didn't provide a lot of carry over outside the therapy room);and then (now) had lidcombe therapy. She went from "moderate/severe" to "very mild", and has maintained this very mild level for a long time (~6 months). My question is if there are research studies on maintenance as children become older? I am especially interested in any studies showing if children maintain these levels (and how).

From: Ann Packman
If you have been doing the Lidcombe Program with your child you will know that the program is conducted in two stages. Stage 1 is designed to eliminate stuttering or bring it down to a very low level, and Stage 2 is designed to maintain that very low level for a considerable time, up to a year or more. During Stage 1 parents learn what to do if stuttering should increase at all later on. A study by Lincoln and Onslow, published in the American Journal of Speech-Language Pathology in 1997, assessed 42 children 4 -7 years after treatment with the Lidcombe Program. They reported that stuttering in these children remained at a very low level in everyday speaking situations.

From: Diane
Thank you for responding. I am interested in any studies beyond just those regarding Lidcombe as well. Are there studies of children who "spontaneously recovered" or "recovered" or "nearly recovered" many years later?

From: Ann Packman
Hi Diane, yes, there is research showing that a few people recover spontaneously (without treatment) after stuttering for a number of years. Unfortunately, it is not possible to predict, given our present level of understanding, whether this will happen for an individual.

From: Patrick Finn
Indeed, there is! It may be that not all fully recover later in life, but there is a surprising number who improve considerably during their adolescent and early adult years. There is a wide variety of research reports that suggest this. Yet, it is often widely overlooked and even dismissed.

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Sibling stuttering chances

From: Sheri Linder
I am a PWS who has a 2 1/2 year old girl in therapy for beginning stuttering. We are doing the Fun with Fluency program and a stuttering preschool group. I also have a 8 month old son. I am wondering what his chances are of being a stutterer? I remember hearing that 90% of stutterers were men.(?) If we continue with the smooth, slow speech, the decreased time pressures, etc... Is there a chance that he might not stutter due to his environment being the way it is for his sister? Also, do you hear a lot about preschoolers being dismissed from therapy? The program we are in has a high success rate but being a lifelong stutterer I have to admit I have my doubts. Also, what does the research show re: Lidcombe vs. a program like Fun with Fluency?

From: Dennis Drayna, PhD NIDCD/NIH
Dear Sheri, Thank you for your question regarding risk of stuttering for family members. I want to congratulate you on aggressively pursuing stuttering therapy options while your daughter is so young. Such early intervention can often achieve better results than waiting until later. . . . It appears that your family may carry an inherited predisposition to stuttering, which is not unusual. Unfortunately, since the inheritance patterns of stuttering are not well understood, it can be difficult to precisely predict the chances your son will stutter. In genetics terms, this is referred to as the recurrence risk, which is currently unknown for stuttering. However, in most families, the chances are relatively low. It is true that more males stutter than females, but in our studies the ratio is not 90%, it's more like 75% males 25% females. So, if I was to make a guess regarding the chances your son will stutter, I might guess something like a 25% chance. One thing is very clear, however, which is that while stuttering can cluster in families, severity does not. So the chances of your son carrying a lifelong significant stutter are probably much smaller. In my family, we have a number of cases of stuttering, and my son developed a fairly significant stutter when he was about the age of your daughter. It gradually disappeared over the subsequent 9 months without any intervention on our part. . . . Regarding the home environment, if your son does develop a stutter, having a good speech environment in the home will certainly be helpful. However, the small amount of genetic data we have suggests children do not learn to stutter by listening to stuttering in the home. . . . Finally, I am not an authority on stuttering therapy, so I cannot comment on children being dismissed from therapy. My opinion is that for the many PWS, therapy is a lifelong job. There is a distinct shortage of research comparing the results of one therapy program with another. Such studies are expensive and they take quite a long time to complete, although it would certainly be useful to have them.

From: Sheri Linder
Thank you so much for your detailed response. It is helpful that you also shared that children do not stutter as a result from hearing stuttering in the home. I am desensitized from my stuttering and was afraid to ask if this could be a reason this started. I might also add that I am VERY careful now to use my slow smooth speech and to make light of my dysfluencies like, oops I spilled milk...oh well, etc... and move on. This situation has changed my parenting for the better and I am hoping to post that in a letter if I get the time before the conference ends.

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Olanzapine

From: Holger Stenzel
Hello Nathan, I do since twenty months a treatment of the stuttering with Olanzapine. With a good result. The dose Olanzapine is 2,5 mg once at the evening. After some days an inner harmony which lasts about the process of the Medication quite continuously appeared. In parallel to that and furthermore it resulted in a clear easing of the strength of the stuttering. Oncoming blockades are to be overcome easier and there is a raised part of fluid periods. The result is an important improvement of the linguistic communication capability particularly in case of short dialogs and telephone calls. That increases to be able to overcome the confidence communicative tasks and decreases possibly the expectation attitude opposite the stuttering. The positive effects of Olanzapine do not lead to continuous symptom freedom. Short or also longer variations occur. You are not, however, as intense as without the medicine. The average improvement of the speaking-liquid under Olanzapine achieves the level of stuttering-strength decreased of natural periods. An almost fluid speech with slight blockades is frequent possible. I evaluate the improvement with at least 30 percent. Over the period of the Medication there were not any important side effects up to now. The blood count shows normal values. Only the level Prolactin is minimal with 20 ug/l increases. There is an easy sleepiness sometimes in the day process. I think no miracle drug is olanzapine. But a very interesting and hopeful beginning is. The results of the multicenter study with Olanzapine were published in this year. Giving Gerald Maguire and his colleagues in the writing: "Alleviating stuttering with pharmacological interventions. " an update for physicians. Will be in the next time a FDA permission for olanzapine in the treatment of Stuttering ? The dopamine hypothesis of stuttering under consideration states that adults who stutter, as a group, have excessive dopamine in the striatal regions of the brain. The National Institute on Deafness and Other Communication Disorders (NIDCD) instructed a study for the Pre- and Post-Synaptic Dopamine Function in Developmental Stuttering: "Assessment of Pre- and Post-Synaptic Dopamine Function in Developmental Stuttering Using 11C-Raclopride and Positron Emission Tomography": They know already results of this research? A team of researchers of the university of Frankfurt has now also discoveries to the basally ganglia activity with stutters that support the dopamine hypothesis. Submitted is the paper: Giraud AL, Neumann K, Euler HA, von Gudenberg AW, Preibisch C. "Severity of stuttering correlates with basal ganglia activity: potential therapeutic implications." In Frankfurt a pharmacological study is planned. The best greetings from Germany! Holger Stenzel holger-stenzel@t-online.de

From: Nathan Lavid, M.D.
Hello Holger, I'm pleased to read that treatment has been helpful. The serotonin-dopamine antagonists (SDAs) appear to be of use as adjunct in stuttering, but as you�re experiencing, one needs close medical monitoring due to the side effects. As for FDA approval for labeling, I doubt that will happen anytime soon. One, the side effects are not benign. Also, the FDA has not approved SDAs for treatment of Tourette's disorder, which is similar to stuttering in clinical course and in the association of increased dopaminergic activity. The FDA has approved haloperidol for Tourette's disorder, but this medication is rarely used due to side effects.

From: Holger Stenzel
Hello Nathan, thank you for the answer. The Stutterers hope worldwide for the research leading to better treatment. Which medical perspective do you see for the future? Will a specific medicine be developed? A thought: Many Stutterers report about "good and bad days". That could be explained with specific neurochemical constellations. There should be a realistic chance to stabilize pharmakologic the constellation of the "good days". That would help many Stotterern already much.

From: Nathan Lavid
Hello Holger, The future is bright. In short, I believe the eventual convergence of findings from neuroimaging and molecular biology research will result in better, specific treatments. I hope to be around when this happens, and I imagine I will be.

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understanding the beast

From: scott yeager
Why is this problem of stuttering seem to be the least understood of communication disorders?

From: Dorvan Breitenfeldt
Scott, You have truly labeled it correctly when you call it a "beast." I am sure that all of us stutterers would agree with you. I suspect that it's least understood because of its complexity and inconsistency. It has baffled mankind since recorded history and will likely continue to do so. None the less we can still treat it with a fair amount of success.

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dyslexia and stuttering

From: Cathy
Is there any known correlation between stuttering and dyslexia? My son shows some of the early warning signs for dyslexia(trouble with word retrieval, learning letters and sounds, distinguishing rhymes, etc) and there is a + family history of dyslexia. He is only four and has been stuttering for a year--so we are just making sure he has good therapy for his stuttering and working on multi-sensory ways of teaching him his ABC's. Just curious if there is a larger percentage of children that stutter with some type of learning disability? I know there has been a lot of research on dyslexia and brain imaging and was wondering if the same part of the brain is involved with both disorders?

From: John Tetnowski
Cathy, Here is a response to part of your most interesting question. There are a number of studies that look at stuttering and associated speech, language and learning disorders. An early study by Blood and Seider (1981) discovered that 68% of children who stutter had at least one concomitant speech, language, or learning disorder (which would include reading disorders and/or dyslexia. A second study (Concomitant Disorders in School-Age Children Who Stutter, Language, Speech, and Hearing Services in Schools, Volume 32, Issue 2. Pages 68 - 78. April 2001, by Jennifer Arndt & E. Charles Healey) found that of the 262 stuttering children that they surveyed (with a verified fluency disorder), 109 (42%) children had a suspected concomitant disorder and 153 (58%) did not have a suspected concomitant disorder. Included in the sample of 109 children suspected of having a concomitant disorder, 20% had a suspected language disorder, 13% had a suspected phonological disorder, and 5% had a suspected voice disorder. A total of 24% of the children were suspected of having a learning disability, and 14% were suspected of having a reading disability. These are almost direct quotes from their research (which is why I gave you the complete citation). Since these numbers are higher than the percentage of dyslexia in the general population, there is clearly some relationship that links the two. The relationship is probably not significant though (I've not done the statistics, but it doesn't look highly significant).

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Money for research on stuttering?

From: Rick
Hi, Money is almost everything in this world and everything cost money. My question is: Is it true that there are more funding available for other speech disorders like aphasia? And more money for research on childhood stuttering? As stuttering researchers, is getting grants and government or private funding a major problem? I imagine this is why East Carolina University hooked up with Janus to develop the SpeechEasy. Will the situation improve in the future (more money for stuttering research)? What about the availability of funding for stuttering research in the U.S. vs. Great Britain vs. Australia. I mean, if there was a $30 million grant over 20 years from the federal government for a collaborative interdisciplinary team effort, maybe we can have a breakthrough on the cause of stuttering and form a consensus on stuttering treatment.

From: Ann Packman
Rick, you have asked a lot of really interesting questions, and I'm afraid I cannot answer most of them! Hopefully, someone else will contribute here. I can speak, though, from our perspective Down Under at the Australian Stuttering Research Centre (ASRC) at the University of Sydney. We are in effect a self-funding centre and we spend maybe a couple of months a year writing applications for funding so we that we can do research for the rest of the year! It takes a lot of time and effort and the field is very competitive. In Australia external research funds (that is, funding from outside one's institution) for stuttering come almost entirely from the National Health and Medical Research Council, which is similar to NIH in US. We are fortunate to have been continually funded this way since the inception of the ASRC in 1996. Details of the grants are available on our website, if you are interested: www.fhs.usyd.edu.au. You will see that the funded projects cover all age groups; there is no bias towards early stuttering. We have many other research studies on the go, but funding is needed for substantial projects. Our colleagues in Melbourne received funding for stuttering research recently from a private source, which is a much-welcomed advance in this country. There is not a strong culture of philanthropy in Australia. It is the case here that funding is usually given for proscribed projects and you make a good point that collaborative interdisciplinary team effort is the way of the future. Certainly our university promotes that. I am pleased to be able to report on a project that has been funded recently in Canada, which is a collaboration between the Montreal Fluency Centre and the ASRC. The project will develop telehealth treatments for stuttering. This collaboration was prompted largely by similarities between our two countries — large land mass and small population. We look forward to more collaborations like this in the future.

From: Rick
Hi Ann, Thank you very much for your response. I really appreciate it. Although I live in the US, it is good to know the funding situation in Australia. I will check out the website you provided me. I think stuttering research is important even though it is not life threatening.

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Question on Speech Easy

From: Kevin Eldridge
Vikram Dayalu stated: "Further, the reduction of stuttering moments under the influences of AAF is robust i.e., these effects do not fade away with prolonged use. This fluent speech can be generalized to more natural speaking environments and speaking tasks (monologues and conversations)." Two questions: 1) You state the effects of AAF are robust, thereby inferring the effects of the SpeechEasy are robust. Has long term data on the SpeechEasy finally been published? 2)If the robust "effects", can be "generalized to more natural speaking environments", does this mean the "robust" findings are only in non-conversational clinical tasks? Your response is appreciated.

From: Vikram
Please refer to the following abstracts as they address the first question. The change in fluency has been observed in both clinical situations (e.g., reading or conversation with the clinician) and in more natural environments (e.g., speaking on phone, engaging in a conversation with friends). However, the current data on the use of AAF is from studies that hasv observed the participant speaking within the clinic across different speaking tasks and from self-reports. Thank you for your interest. Vikram Kalinowski J, Guntupalli VK, Stuart A, Saltuklaroglu T. (2004). Self-reported efficacy of an ear-level prosthetic device that delivers altered auditory feedback for the management of stuttering. Int J Rehabil Res., 27,167-70. Numerous past efficacy studies in stuttering treatment have typically failed to assess generalization of therapeutic gains across speaking environments over time. The purpose of this study was to use a self-report format to gain insight into the improvements of clients who purchased an all in-the-ear device that provides altered auditory feedback to manage stuttering symptoms across everyday speaking situations. A total of 105 participants (age 7-81 years) returned completed questionnaires that examined seven parameters of stuttering behavior before acquiring the prosthetic device and after using the device with minimal clinical intervention for an average of 6 months. Across each parameter, participants rated a significant (P<0.001) improvement of approximately two units on seven-point scales after beginning to use the prosthetic device. In addition, the device received high overall satisfaction ratings, with a median score of 2.0 on the seven-point scale. Self-report is a 'must' for examining clinical efficacy in a disorder such as stuttering, which is so amenable to 'clinic room fluency' yet highly resistant to long-term amelioration. The data suggest that this device is helping to provide its users with functional, effective and efficient management of stuttering without the need for extended clinical follow-up. Stuart A, Kalinowski J, Rastatter M, Saltuklaroglu T, Dayalu V. 2004Investigations of the impact of altered auditory feedback in-the-ear devices on the speech of people who stutter: initial fitting and 4-month follow-up. Int J Lang Commun Disord., 39, 93-113. BACKGROUND: Self-contained ear-level devices delivering altered auditory feedback (AAF) for the application with those who stutter have only been recently developed. AIMS: The paper examines the first therapeutic application of self-contained ear-level devices in three experiments. The effect of the device on the proportion of stuttered syllables and speech naturalness was investigated following initial fitting and at 4 months post-fitting. METHODS & PROCEDURES: Three experiments were undertaken: In Experiment 1, the effect of a self-contained in-the-ear device delivering AAF was investigated with those who stutter during reading and monologue. Two adolescents and five adults who stuttered read and produced monologue with and without a device fit monaurally. The device provided a frequency shift of +500 Hz in combination with a delayed auditory feedback of 60 ms. Custom-made ITC and CIC devices were fabricated for four adults and four youths in Experiment 2. The effect of group (i.e. youth versus adult), time (i.e. initial fitting versus 4-month follow-up), speech task (i.e. reading versus monologue), and device (i.e. present versus absent) on stuttering rate was examined. In Experiment 3, 15 naïve listeners rated the speech naturalness of speech produced by the participants in Experiment 2. Speech samples from six conditions were rated: reading and monologue without the device at the initial visit, reading and monologue with the device at the initial visit, and reading and monologue with the device at 4 months. OUTCOMES & RESULTS: In Experiment 1, the proportion of stuttered syllables was significantly (p=0.011) reduced by approximately 90% during reading and 67% during monologue with the device relative to no device. Only a significant main effect of device (p=0.0028) was found in Experiment 2. That is, stuttering rate was significantly reduced with the device in place regardless of speech task or group and remained so 4 months later. In Experiment 3, speech samples generated while wearing the device were judged to be more natural sounding than those without the device (p<0.0001) for reading and monologue with both adults and youths. There was no significant difference between the mean naturalness ratings of speech samples generated during the initial fitting with the device relative to that at 4 months with the device (p>0.05) in all cases except with the youths while engaged in monologue. For that condition, raters judged the speech produced at the initial fitting as more natural. CONCLUSIONS: These findings support the notion that a self-contained in-the-ear device delivering AAF assists those who stutter. With the device in place, stuttering is reduced and speech produced is judged to be more natural than without the device.

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research of the next years

From: Holger Stenzel
Which one will the emphases of research for the next years? Holger Stenzel, Germany

From: Dale Williams
I can only guess, but will suggest the following: Treatment efficacy, genetic factors, and identification of children likely/unlikely to recover.

From: Nan Ratner
I happen to agree with Dale, but would also add that research will increasingly try to become multi-factorial (not trying to solve the problem of stuttering only in developmental brain anomalies, or the larynx, etc.) by accommodating motor, linguistic, and cognitive/learning factors in the origins and DEVELOPMENT of the disorder that are relevant to treatment; seeking to make treatment options responsive to etiological research, and responding more to PWS' concerns and needs in the therapeutic process.

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Were Johnson and Sheehan wrong about stuttering?

From: Rick
Sigmund Freud was obviously wrong about stuttering. My questions is: Wendell Johnson and Joe Sheehan were two famous stuttering researchers, but were they actually wrong about stuttering? For example, Johnson believed that the cause of stuttering was all environmental (e.g. the Monster study). Presented with all the brain imaging evidence and genetic data today, how would Sheehan explain his "approach-avoidance" theory developed in the 1950's? Are we supposed to read books and research papers published more than twenty (or even ten) years ago, because it might be misleading or unuseful.

From: Vasu Parameswaran
Hi Rick, I am no researcher and I hope it is not out of line for me to participate in this thread (sorry Judy Kuster :-)). I have read books of both Sheehan and Johnson, and have found them not only enlightening by immensely enjoyable to read. It is unfortunate that the term "Monster Study" has been inextricably linked with Johnson. Johnson had great ideas and judging by his writings, he had a great and honest mind. And so did Sheehan. I don't think the approach avoidance and role-conflict theories have been "disproven" as such (the researchers can correct me). In fact, Sheehan acknowledged the presence of a neurological component of stuttering. In any case, what's important is that these men had ideas - they thought about stuttering in innovative ways (in their time). About your question on whether we should read stuff written 20 years ago, I would say "Absolutely!". Newton's laws held firm for over 200 years and though they are not technically correct, they're accurate enough for practical purposes and are used all over the place to this day. Anyway, that was my 2c. ISAD is great but short-lived. I wish there were a forum where average people who stutter could discuss stuttering research and therapy with researchers throughout the year.

From: Retz
Vasu....Agree with you 100% regarding Johnson and Sheehan. All of their research and findings should definitely be required to be examined, reviewed and discussed by those wanting to have the honor of working with children who stutter, teens who stutter and their parents. After attending the SID # 4 conference this year, it did seem that it was the "in thing" by many professionals regarding themselves as "experts" to easily trash many of the-- what I consider to be -- "Great Ones." Your post was refreshing, and I do hope students in Comm. Dis. wanting to work with CWS/TWS and their parents will at least explore by themselves when many of their instructors choose to say "pay no attention." It is easy for those who do not stutter to do and say this. I say find out all you can about everything the "Great Ones" did. Hell, they started the field! They couldn't have been that ignorant.... Glad your involved in the ISAD conference. It would be neat to see it go on and on and on....Hope to meet you someday!

From: Rick
Hi Vasu, Thank you very much for your response. I really appreciate it! I agree with you, these men had great ideas. Sheehan's iceberg analogy is still one of the best stuttering analogies today and will still be true for the next 50-100 years. Johnson and Sheehan were giants (heros) in the field of stuttering. It takes a stutterer to know what stuttering is like, and Johnson and Sheehan understood stuttering. Regarding Newton's law, I don't think we discovered Newton's law in stuttering yet.

From: Vasu Parameswaran
Hi Rick, Thanks for your comment. I agree there have been no earth shattering discoveries in stuttering that merit a comparison to Newton's laws but my point was that "old" does not necessarily imply "wrong". About Sheehan/Johnson, my point was not simply that they were giants but that there were many sound ideas that were proposed by them that do not appear much these days in therapy programs. Where do you see any talk about role-conflict and approach avoidance? Where do you see talk about voluntary stuttering with a clear rationale for using it? On the other hand, we constantly hear the word "technique" and I have not yet seen a convincing theory or basis for the use of any "technique". In my opinion, the use of a technique to get rid of a disfluency is the most unimaginative way to think about a disfluency. The rationale appears to be "it does not sound good, so let us make it sound good!".

From: Retz
Vasu....You are so right on!!!! So glad you are in the conference! Refreshing to see/hear someone respect the GIANTS....

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Efficicacy Research

From: Vasu Parameswaran
It seems to me that a very important question is efficacy measurement of therapies. While science demands quantifiable outcomes, I think that it is naive and misleading to rely on the percentage of disfluencies as a reliable measure of outcomes. There are a lot of criteria for success which unfortunately do not lend themselves to easy measurement - e.g. fear of speaking, word-substitutions, quality of life determined by the number and kind of activities that the stutterer participates in, and even basic things like eye-contact. But progress in each one of these criteria is vital for recovery. Is there any real research into devising a set of metrics that can be applied across a range of therapies to compare their efficacies?

From: Anne Bothe
This is one of my favorite topics -- glad it came up. I think I am one of those people who is occasionally typecast as supporting the view that the "only" goal of "all" stuttering treatment is "just" to "get to zero stuttering." I suppose I can see how some of the things some researchers (including me) have written might be oversimplified to get to a statement like that, but I also think that all of us who have ever thought about, written about, or researched anything in the general territory of "What is the goal of stuttering treatment, and how do we know that we have achieved it?" really do have much more complex views than any sound-bite can capture -- and I mean that from both directions: I think people like me who tend to emphasize the importance of measuring stutters in speech and reducing stutters in speech really do recognize that fear of speaking, word avoidances, etc., just to use the examples you raised, really are important, and, equally, I think people who tend to emphasize those kinds of variables really do also recognize that the number of times a speaker stutters might also be something relevant that we might want to be able to get a handle on. That said -- is there "real research" on "devising a set of metrics" that would then somehow be required of all studies, or used in all studies, so that those studies or treatments can be compared? No, not that I'm aware of, and I also don't think it's necessary. Even if we could all agree on some set of all the POTENTIAL variables that COULD BE relevant for any given person (such a set, by the way, being essentially infinite, as far as I'm concerned), I don't think there is such a thing as the set of variables that ARE BY DEFINITION relevant to ALL persons who stutter. Equally, I don't believe that any two studies need to have used the same measures to be compared -- if one study shows that Treatment X reduced percent syllables stuttered and increased self-efficacy scores, and another study shows that Treatment Y increased percent of fluent utterances and decreased self-reported instances of word avoidance, then any clinician or client who is interested in any of those four outcomes has relevant information. Of course, any of us who have "favorite" measures then start, at this point in the discussion, to suggest that the "minimal set" that everyone should use looks like, basically, "my favorite measure plus whatever else you feel like throwing in." My own personal take on this is that we would be better off, as a research and clinical community, if all stuttering treatment research at the very least gave us information about the number or percent of stutters, speech rate, and speech quality, before, during, and after treatment -- but that's just my bias coming through.

From: Vasu Parameswaran
Hi Anne, Thanks for your comments . If what you're saying is that researchers/therapists interested in measuring stutters are also interested, at least equally, in measuring (e.g. by self reporting) substitutions, situation avoidances, situation "entries" (if you will), then we both agree. But I think that we are far away from measuring aspects other than stutters. You mention that evaluation criteria are infinite and that all criteria do not apply to all people who stutter. That may be the case, but that does not imply that efforts to find meaningful criteria for success are useless. I believe that research needs to ask and answer this question: can we find a set of reasonable criteria for success that applies to most stutterers? Every stutterer I imagine wants to take part in more speaking situations. Every stutterer wants to say exactly what s/he wants to say without compromising the content with substitutions and circumlocutions. Every stutterer wants to stop worrying about the next speaking situation where they may have to say their name. I don't know how to measure these aspects and I am not saying that devising criteria that depend upon these is easy - but that is where the research community needs to step in and should atleast take a first whack at the problem. My larger point is that measurement is important, but measuring only the things you can measure the *easiest* (i.e. disfluencies) is not scientific - you measure only along one dimension in a multidimensional space of severity. An important point here also is that there is *not always* a simple monotonic relationship between progress and time. In some therapies, you may become *more* disfluent in the early or mid stages of therapy because you are simply talking more and taking part in more and more situations (which is progress along one dimension and regress along the fluency dimension), Over time, as you work your way thru therapy you become more fluent *and* you have made progress along the other dimensions as well. Thanks again for your and I am glad to discuss these issues with you and others.

From: scott yaruss
hey folks - thanks for bringing this up Vasu - sorry to be slow in responding. it's not at all because the topic isn't important. indeed, it is among the most important topics we can discuss in terms of treatment outcomes research... I thought Anne's post was interesting, sort of framing the differences -- and similarities -- in different ways of approaching the problem. I'm going to agree that it's probably impossible to come up with a COMPLETE list of all of the possible issues that might apply to all people who stutter... but I'm not sure that's the task, and I think just because it's tough doesn't mean we shouldn't try to do something reasonable -- find a middle-ground that allows us to capture several key parameters that are meaningful to many people who stutter... Some is better than none, in my opinion. SO, what factors? well, of course something about speech fluency -- but i'm interested not JUST in the clinician's view of the disfluencies, but also in the SPEAKER's view of those disfluencies. The speaker's perception of his speaking difficulties will play a large role in determining how he reacts to them and how he feels about himself as a communicator, regardless of what the clinician's frequency counts might say. SO, sure, count stuttering, but also assess things from the SPEAKER's experience... And in fact, that leads to the broader set of variables I'm interested in -- the speaker's experience of stuttering. Some of you may know that Bob Quesal and I have been working for some time on developing a paper-and-pencil instrument that can be used to give people who stutter the opportunity to explore their experience of the overall stuttering disorder -- how they react to their stuttering, how they feel and think about themselves as people who stutter, what stuttering means for their ability to communicate in real-world situations, and the impact of stuttering on their quality of life... The instrument, called the OASES (Overall Assessment of the Speaker's Experience of Stuttering) can be obtained on my website (www.StutteringCenter.org) and Bob and I will soon be submitting it for review and, with luck, eventual publication. (In fact, Bob and I are both on sabbatical this term -- thus the slow response to your post -- and we will be meeting next week to finalize the manuscript.) It's been a long process developing this instrument, in part because of the complexities that Anne alluded to. Trying to figure out what factors are relevant for a large subset of people who stutter has led us to examine the reports of focus-groups who told us about their speech, pilot analyses (done in large part with the assistance of the National Stuttering Association), field-testing, validity and reliability checks, etc., to see if we can come up with a set of test items that tells us something meaningful about a speaker's experience of stuttering. I think we�ve succeeded, but this is where we might run into a bit of disagreement between various camps in the field of fluency disorders. When we come back to the questions of whether or not we can get a good handle on a set of items, I start looking for a model to guide our thinking. I wanted to link our efforts to a broader definition of health-related experiences, so as a starting point for the OASES, I used the World Health Organization's (WHO) International Classification of Impairment, Disability, and Handicap (ICIDH) — that original framework has now been replaced by a newer framework, the International Classification of Functioning Disability and Health (ICF). It describes that the experience of any health-related issues (and stuttering is one) can be viewed in terms of the impairment in the structure or function of a person's body (in this case, the impairment is in the functioning of the speech mechanism), and the impact that impairment can have, in terms of limitations in the person's ability to perform daily tasks (like talking in various situations) and the restrictions that the impairment may ultimately cause in the speaker's ability to participate in his life in the way he wants to. It also accounts for the speaker's reactions to their impairment (which play a large role in determining the extent to which the speaker will experience negative impact) and it also accounts for the reactions of those in the speaker's environment (peers, teachers, parents, etc.). Thus, we have a complete view of the stuttering disorder. (If you're still reading at this point, you know that I have a lot to say on the topic and there's more ;-) check out Yaruss (1998) and Yaruss & Quesal (2004) and a bunch of other articles, including some here on prior ISAD conferences. Here's where I think we can move beyond just speech fluency and speech naturalness we have guidance from a world-wide organization (WHO) about what factors we might consider when we think about the impact that people's conditions might have on their ability to function and participate in life (ICF). The OASES starts with these components (impairment, personal reactions, environmental reactions, and impact on the person's life) and follows with a series of questions in these domains that are particularly relevant to the lives of people who stutter. We know their relevant through the field testing. Are they ALL relevant items? No, not by a long shot but they do help us get a handle on the speaker's experience of stuttering in a mere 100 items. (100? Yup but it only takes about 15 minutes for people to complete.) If people can describe their experience of stuttering for the most part in just 15 mins, then I think we're doing okay and we're headed in a good direction. Again, I understand that others may have different opinions, but I see no reason to limit our data collection just to speech fluency, speech naturalness, etc. and �my favorite measure� when we can indeed get a pretty good idea based on the responses from several hundred people who stutter, then we're in pretty good shape, at least for a start. Of course much more work remains to be done. Does this mean I think we should force everybody to use this set of measures, to come back to Vasu's original question - no, we shouldn't force them, but it would be pretty good if we could all come to agreement about the importance of considering the speaker's experience, rather than the clinician's interpretation of same. Sorry to be long winded, Judy, I hope this will make up a little bit for my nonparticipation ;-) (I only had time for the response today because my flight is delayed, so I'm sitting here in DFW with a few unfilled minutes!) Hope this helps if you have more questions or thoughts about this after the conference is over, just email me at jsyaruss@csd.pitt.edu... Thanks for listening (if you're still reading by now -- I guess I'm not known for my short responses. 😄

From: Ann Packman
I would like to add to this discussion by suggesting that measuring treatment efficacy in young children warrants special consideration. In our experience, when parents come to the clinic with a preschooler who is stuttering, typically their only request is for their child to stop stuttering. Evidence suggests that the preschool years present a window of opportunity for achieving this, before stuttering becomes �entrenched� as a behavioural feature of speech production. I suggest, then, that some measure of stuttering should be the primary outcome measure for treatment for preschoolers. Of course, this is particularly relevant when making claims about treatment efficacy with this age group, given that many children recover naturally. I hasten to add that we must continue to ensure through research that treatment reductions in young children do not come at a price; that is, that treatments do not have undesirable side effects.

From: Patrick Finn
AS a researcher, my belief is that a measure of stuttered speech behavior is essential no matter what other complaints may exist. Science requires an objective indice of change. This does not for a moment mean that the client's concerns that may extend beyond stuttering are not important. For me, the concept of clinical significance has become the fulcrum for scientifically investigating the broad array of concerns that may matter to a person who stutters. Clinical significance refers to the meaningfulness or practical benefits of change and, at least for me, that becomes the entry point for investigating changes that matter to the person who stutters. Yet, at the same time, does not sidetrack the scientist from the objective indices of treatment change.

From: Vasu Parameswaran
First of all, thanks to everyone for their comments. Thanks to Scott for the detailed response. I browsed thru the OASES instrument and it definitely seems like a step in the right direction. I happen to think that ATLEAST items I.A and II.B from the instrument are relevant to most if not all people who stutter. Granted that some therapists may have their favorite criteria but I think that can be left to the client. The client can be asked how important each criterion is for him/herself. I agree that measurement and predictability are the basis for science. However, we cannot simply only measure things that are the easiest to measure - we need to find ways of measuring and measure other important aspects as well. I suspect that reliance on self-reporting may be a weakness of the instrument but it is definitely better than simply measuring disfluencies and I think that OASES is a great start.

From: scott yaruss
hey folks - greetings from Arkansas! I want to chime in and just say that the oases is designed to be used IN CONJUNCTION WITH -- not instead of -- other measures, such as the objective measures of surface characteristics that Patrick responded to. I'm sorry if I didn't make that clear. I use the OASES (and the child version, the ACES) as additions to standard measures of frequency and type of disfluencies (as I described in yaruss, 1997, 1998 -- that's been a long-standing area of interest for me as well)... And then, we combine all of the information we get to help us understand the true scope of the stuttering disorder for each individual we are working with.

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Tourettes and Stuttering

From: Dori
I have twin sons, age 12, who both have mild tourettes, officially diagnosed. I also have an 8-year old son who stutters. (I wrote the "What I wished I had Known" piece) Just curious -- I understand that there may be a connection between the two afflictions -- what's the latest? Genetic predisposition? Food allergies?

From: John Tetnowski
Dori, According to Comings DE, Wu S, Chiu C, Ring RH, Gade R, Ahn C, MacMurray JP, Dietz G, Muhleman D, in the AMERICAN JOURNAL OF MEDICAL GENETICS 67 (3): 264-288, results from a 1996 genetic study indicate that TS, ADHD, stuttering, oppositional defiant and conduct disorder, and other behaviors associated with TS, are related through a specific genetic series. This seems to point to a genetic link. Later, a review in 2003, titled, Stuttering: a dynamic motor control disorder, by Ludlow CL, Loucks T (JOURNAL OF FLUENCY DISORDERS 28 (4): 273-295), relates stuttering to the same motor control deficits that affect children with Tourette Syndrome. This can be interpreted as meaning that the disorders are similar, and may even be confused with each other (when we only look at the behavioral symptoms). These studies show that there seems to be a relationship. In my personal experiences, stuttering has been used as an incorrect label for children with mild forms of TS. Every time I talk on this subject, 4 or 5 people in the audience tell me that they have similar children on their caseload. I think it is more than a coincidence. At this time, I believe that Joe Donaher in Philadelphia is conducting a fairly large study in this area. I hope Joe can join in!

From: Joe D.
Dori, Several studies have suggested that both stuttering and TS may be linked to the supplementary motor system of the Basal Ganglia. Evidence for this may stem from secondary stuttering behaviors which manifest similarly to tic behaviors and suggest Basal Ganglia dysfunction. This theory would suggest that many people who stutter may represent undiagnosed cases of TS. Others suggest that striatal hypometabolism may be responsible for both disorders. This theory implements increased levels of Dopamine and has been particularly popular with those studying Dopamine blocker meds.

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Stuttering and Sensory Stimulation

From: brett herbeck
I was wondering if there has been any research regarding children who stutter and who have sensory stimulation tendencies, like hair biting, fidgeting, etc. Specifically if there is any relation between the two.

From: Dorvan Breitenfeldt
Brett, To my knowledge there is no relationship. However, there may be some research somewhere addressing these areas as graduate students need a research topic to pursue to graduate.

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Cultural Differences In Stuttering

From: Christina Landon
I was wondering if there has been any recent research done re: cultural differences in stuttering. I know that stuttering can occur across different cultures, but are there different techniques and approaches that work better for different cultures, or does it just depend on the individual? Also, has any research been done that shows statistics of what percentages of different cultures stutter? (ie: do Anglo-Europeans have a greater percentage of individuals who stutter vs. Native Americans?)

From: Nan Ratner
I do not know of real and meaningful prevalence/incidence differences that vary by culture. While no therapy has been found more effective for specific cultures, there may be more or less acceptability of some therapy approaches by some cultural groups. I do have a chapter that addresses this issue with specific reference to the Hispanic population.

From: Mary Beth Hetherton
I am curious about research related to cultures? In particular if languages with a more rapid rate have a higher percent of PWS?

From: Nan Ratner
Actually, contrary to some popular opinions, rate of speech does not vary tremendously by language, although it can seem so to non-native listeners. So, there are no real data to answer your question.

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People who stutter and the Internet

From: Tim Schultz
Hi, This forum presents an excellent example of an open exchange of information between all different types of people--and none of us can tell whether or not we stutter. I'm curious if any of you are familiar with research on this phenomenon: Specifically, has the use of the Internet for communication as an alternative to speech by people who stutter been researched in a systematic way?

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Stuttering/Language correlation

From: Jen B.
I was curious if there is any research present that shows a correlation between people who stutter and having accompanying problems with language. I have heard conflicting stories about people who stutter having language problems v.s. most having above normal language skills. Is there any research that can resolve this?

From: Nan Ratner
This is an interesting and tough question. Quite a bit of research suggests a high degree of comorbidity (co-existing conditions) among the communication disorders in children that include fluency, language and articulation. Much of this work has been done by survey, and so may not be as reliable as widespread (expensive!) testing of children who present with any of these conditions. There is a fairly respectable body of research (I can give you references if you'd like) that suggests subtle differences and ability levels in a variety of areas of language processing in PWS. These studies do NOT use standardized tests such as we see in clinics to identify people with frank language impairments. Combined with this is an additional body of literature that suggests that people who stutter may have unbalanced language abilities. This has yet to be fully explored in young children near onset, but it seems from a couple of studies that children who attempt to produce language at above-age-level difficulty (and with less developed abilities in some other areas of language knowledge) may be at least a portion of early stutterers, and that those who continue in this path are more likely NOT to spontaneously remit from the stuttering pattern. All this is complicated.

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The Valsalva Hypothesis?

From: Rick
I was checking out Bill Parry's website http://www.valsalva.org/ and found it very interesting. I actually had the chance to hear Parry talk about the valsalva mechanism. I don't understand it really well, but found the hypothesis interesting. Anyway, Bill Parry said in his website: "Meanwhile, stuttering research has almost completely ignored the possible involvement of the Valsalva mechanism in stuttering behavior - which, if properly understood, could bring immediate, practical benefits to many people who stutter, for no additional cost and with no harmful side effects. While the Valsalva mechanism is well known to medical science and even trombone players, it is rare to find it mentioned anywhere in the speech pathology literature. Consequently, information about the Valsalva mechanism is not conveyed to speech therapists or to their clients." End of quote. So why have stuttering researchers around the world ignored the valsalva mechanism? Is the Valsalva hypothesis just incorrect or fundamentally shaky that it is not worth the time and effort for further scientific investigation? Can we carry out a sound scientific study to prove or disprove the valsalva hypothesis.

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About the answered questions on this list

From: Anne Bothe
I'd like to ask a question of the other researchers on this panel, if I could: Are you all doing the same thing I'm doing, which is reading these questions but being hesitant to answer because you haven't done the particular research in question? I just ended up wondering about this because I've been clicking in and reading all month and hadn't actually had the courage to post anything until just this morning, and that was after Judy had prompted me! Ann Packman has been consistently answering the Lidcombe-related questions, and certainly several others have posted, but why, in many other cases, are so many good questions going unanswered? Is it a character trait of researchers to be somewhat hesitant to make pronouncements? (Sorry if I'm breaking Judy's rule about "getting long discussions going")

From: Dale Williams
"Is it a character trait of researchers to be somewhat hesitant to make pronouncements?" Good question. Certainly I have felt that others were more qualified to answer questions in areas I haven't researched. But, to be honest, it's also true that firm pronouncements are easy to make to a student seated in my office; not so easy when I know experts are reading them.

From: Nan Ratner
Actually, as you know, I am not shy. But I actually wanted to see if other researchers would weigh in on some questions that I perceived to be more in their bailiwick, rather than just jumping in on multiple questions. best, Nan

From: Patrick Finn
Personally, I find this kind of forum for exchanging information awkward and impersonal. At the same time, I fully recognize that this has become a common forum for discourse. Call me old-fashioned, but I much prefer face-to-face, one-on-one, human-to-human contact. Having said that, I want to acknowledge Judy Kusters' groundbreaking efforts relative to this conference. My hat's off to her!

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The DIRECT approach

From: Sheri Linder
Dr. Bothe, I just read your parents as partners article from 2 (?) years ago and was wondering if you could help me understand the "direct" approach in preschool stuttering treatment. I am a PWS and have a 33 month old girl currently in therapy for beginning stuttering. We are doing Fun with Fluency. We were basically doing indirect for about 3 months with some progress. Our clinician went 'direct' on her and I believe at this point her stuttering got alot worse because we called her attention to it. We had a week of being alot more dysfluent and my anxiety got so high I was calling our therapist almost everyday. She said she was probably having a down cycle. Eventually, she leveled out again but I am not very direct with her. After reading your article I wonder if it is common for it to get worse before it gets better after going direct. She is back to being unaware of her dysfluency and I really play it down like, "that seemed hard, Mommy has a hard time too sometimes", etc... I also praise her for random times when she is fluent, "wow! That was really good talking!" I also try to put in perspective all that she is learning along with being a "smooth talker", " We are working really hard on using the potty, smooth talking and sharing our toys". As a PWS it was so hard to see her trying so hard after she became aware that she should do something about it. I did not let her know how anxious I was about her stuttering but I know she noticed the extra time I spent holding her and I also kept her out of preschool that week because I was afraid she would not get all the time she needed to communicate. I know I am rambling on but I feel like I really need to know that it is OK to point it out to her and try some direct therapy. Your article suggests that direct therapy is essential to her progress. Also, do you think Lidcombe is for us at this time? Are you familiar with Fun with Fluency?

From: Anne Bothe
Hi -- If you'd like to send me an email directly to abothe@coe.uga.edu, I'd be happy to correspond further about direct and indirect treatments. As far as something for general public consumption here, I'll just say that there is plenty of research that shows pretty clearly that direct treatment tends to have very good results on children's speech and no ramifications as far as their language, emotional status, etc. (as far as that last, I'm thinking of a study from the "Lidcombe" group; perhaps Dr. Packman will weigh in here). Of course, if you think your daughter got worse, then I believe you, and my best advice would be to do exactly what you seem to be doing: Stay sensitive to her and her needs, and work closely with her SLP.

From: Ann Packman
In our experience with the Lidcombe Program, there are a few children who react negatively to attention being drawn to their stuttering. In the writings on the Lidcombe Program it is made clear that the clinician (SLP) must ensure that the treatment is an enjoyable experience for the child and family. Every child and family is different, and if a child reacts negatively, the parent and clinician must work together immediately to find ways to implement the program so that this does not happen.

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Seratonin

From: Alexis Molineux-Gibbons
I am a Speech Language Pathology student and am just being introduced the causes of stuttering. I read recently the SSRIs are being used as a possible treatment. Is there a connection between seratonin and stuttering, or are these being used to address secondary symptoms such as anxiety?

From: Nathan Lavid
Hello Alexis, Role of the serotonin in stuttering is not well understood, and this is revealed in the literature where there are case studies of SSRIs &*mdash; which increase serotonin in the synaptic cleft — alleviating stuttering and there cases studies observing the induction of stuttering speech. SSRIs are approved by the FDA and used in the treatment of a variety of anxiety disorders, but the FDA has not approved the use of SSRIs for the treatment of the anxiety associated with stuttering. As this conference is devoted to children, the �off label� use of SSRIs in children who stutter is very rare. Children respond to SSRIs differently than adults, and the risks of using these medications to treat anxiety in those children who stutter supersede the possible benefits. There are other approaches to treat the anxiety associated with stuttering. Cognitive-behavioral therapy is an approach that has nominal risk and good efficacy.

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Inmate population

From: Liz
I am a graduate student at Fort Hays State University in Hays, KS. I have recently begun collecting data for my thesis on auditory processing abilities of adult male offenders. In my "ventures," I have encountered 2 participants who stutter out of about 35 so far. I was just wondering if any research has been conducted within the prison population in regard to fluency.

From: Judy Kuster
I'm not one of the "official" researchers here, but like to support students as they do their research projects, so I'm going to jump in on this one. I'd encourage you to do a Medline search and additional searches in psychology literature, etc. that your librarian can help you with. But I am aware of a couple of things that might interest you. There has been some research in the UK. Check the article and the bibliography that is online from the BSA. The bibliographical references in that article may provide additional bibliographic references for you if you can get ahold of the articles. The article I know about from the BSA is: Stammering in prison by Karen Bryan PhD Reg MRCSLT http://www.stammering.org/prison.html I also remember an old report by Van Riper at short course on stuttering, for the Michigan Speech and Hearing Association, October 21-22, 1971, where he told the story of "James" who had a severe stutter. James had spent 11 years in prison in Maryland. A couple old resources were cited in Van Riper's handout. You might be interested in an historical perspective if you can track down the articles: "Hearing and Speech Behind Bars," Hearing and Speech News, Volume 39, Number 4, July-August, 1971, pp. 4-7. and Tippett, Davis and Mills, article (CVR didn't provide the title) in Western Michigan Journal of Speech Therapy, Volume 8, Number 1, March, 1971, p. 8

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Children and brain differences

From: D
I have read alot of research that points to subtle differences in the brains of adults that stutter vs those who do not (especially with regards to neurotransmitter levels). I was wondering about children. Do these same findings apply? If so, what about children that have spontaneously recovered from stuttering? What seems to be going on there, as far as brain functioning?

From: Nan Ratner
That is a very good question, because we want to make sure that brain differences we see are more likely to be the cause of stuttering, rather than the brain's adaptation to living with it. Unfortunately, I do not know of any yet published research using children. One body of data that suggests that the physiological differences we see in neuroimaging might be there early in life consists of two recent studies (Foundas et al., Sommers, et al.) that have found anatomical differences in the brains of people who stutter and fluent comparison speakers.

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Threaded discussion [with researchers] is now closed

From: Judy Kuster
Date: 22 Oct 2004
The live, threaded discussion part of the 2004 ISAD online conference is now closed. The conference paper and responses made here during the conference will remain online. Thank you for stopping by. Judy Kuster