photo: mararie

In May 2009, the National Stuttering Association (NSA) conducted a survey to gather information about stuttering. They received responses from 1,235 people, including 686 adults and 31 teens who stutter.

The survey showed some very positive things including:

• Changing one’s attitude toward speaking and stuttering was the most successful therapy approach for both children and adults.
• One third of the adult and teen respondents had had therapy from a Board-Recognized Specialist in Fluency Disorders (BRS-FD). Those who worked with a specialist were more likely to have had a successful therapy experience and were more likely to have attended a stuttering support group.
• In general, parents reported more successful speech therapy from university speech clinics, private-practice clinicians and intensive programs than from school speech therapy.
• Children who work with a BRS-FD also are significantly less likely to avoid speaking situations, significantly less likely to find that stuttering interferes with social and family life, significantly less likely to be embarrassed about stuttering, and are more likely to have had a successful therapy experience.

The survey collected some great information that can help you when making decisions about stuttering therapy. You can download the full report from the NSA.

Thanks to the NSA for their diligent work in supporting and learning about people who stutter!

Related posts:

1. Stuttering surveys: Susan quizzes people in the airport about stuttering
2. Carl talks about an inspiring activity from our therapy group for stuttering children
3. Rashad speaks to his middle school class about intensive stuttering therapy

If you have an idea for a reward activity for the kids, please tell us in the comments!

Related posts:

1. Carl talks about an inspiring activity from our therapy group for stuttering children
2. Stuttering in preschool children: Carl speaks to the teachers
3. Stuttering in children: Junior reports on the book ‘Sometimes I Just Stutter’

photo: Janus Development Group

An interesting discussion is taking place in the comments of our May 2009 post “A great research article on the SpeechEasy.” We’d like to bring this exchange to the forefront rather than have it remain virtually buried in last May’s archives. The post featured a short video of Chamonix introducing a research article by then-AIS intern, now PhD (congratulations!), Ryan Pollard on the SpeechEasy, an altered auditory feedback device that was developed to reduce stuttering.

Dr. Joseph Kalinowski, a professor at East Carolina University and co-inventor of the SpeechEasy, commented earlier this month on that post. Here is his comment:

I “graduated” from CRC – the center Cathy ran in 1981 and that was a life changing experience. Her work, dedication and all she does for those who stutter are remarkable gifts to all of us who stutter. I personally will never be able to repay her for her efforts in my life but my colleagues and I have, in some small way paid it forward to others who stutter. Our work with the Speech Easy and altered auditory feedback (AAF) is more of a tribute than a challenge to all those who work so hard in the behavioral/cognitive modality.

My colleagues and I suggest that stuttering therapy should consist of anything that helps that individual who stutters. That may be behavioral/cognitive therapy alone, altered auditory feedback devices, AAF and behavioral/cognitive strategies together or no therapy at all. The client should make choices based on what works for them. We respect consumer choice!

We recently had a replied to Pollard article in JSHLR, that reply pointed out a number of methodological and interpretive concerns on our part. This reply should appear in JSHLR in the next few issues, the authors of the study will reply in kind. We will let the readership of that journal decide for them what was really found in that study.

We know a few things for certain:

1. Altered auditory feedback is a powerful stuttering inhibitor (choral speech, shadow speech, delayed auditory feedback (DAF), frequency altered feedback (FAF), reverberation, etc.

2. The Speech Easy generates a form of AAF that is helpful to many people who stutter, and although the Pollard study showed a lack overt improvement, most of the users in that study were pleased with the SpeechEasy. Some purchased the SpeechEasy, while others said it was something that would use if it were provided for free (e.g., insurance, vocational rehabilitation). That is very strange….. All other peer-reviewed journal publications on the Speech Easy revealed significant, long-lasting improvements. With this in mind, more research will reveal the true nature of AAF in stuttering therapy.

We are all working for the betterment of those who stutter. It may appear that we are on different roads but that is illusionary, we all want the day to come when oral communication by a person who stutters is free of overt an covert symptoms (e,g avoidances, substitutions, circumlocutions), is natural sounding, and effortless. No therapy modality (drugs, behavioral/cognitive therapy, AAF) perfectly achieves that goal as of today. We all continue our quest and hope others see our vigorous debates as a sign of a vibrant, intellectual community that is in pursuit off the best answers. The road is long, and some of the travelers are tired and getting old, but we know that others will continue the quest for unbridled fluency and one day that dream will come true.

I wish you, Cathy and all those at the center the best of luck and am grateful for all you do.

We thank Dr. Kalinowski for taking part in the discussion. Here is what Chamonix has written in response:

Hi Joe – Thanks so much for your comment. 1981 – that’s quite a history with Catherine (Cathy to you!). This place and the therapy have changed a LOT since then, but so has the field and the information we have, so it should change.

I have done hundreds of consultations, and many of the clients have tried the SpeechEasy device and were unhappy with the results. But I’ve also read research articles that show some clients who continue to successfully use it.

When a new client asks me, “What about these things that you stick in your ear?” I share with them what many clients have shared with me, articles that I am familiar with that have been published, and updates at conferences that I attend. I refer them to an SLP who distributes the device here in NYC if they want to try it for themselves. I never tell a client what will work for them or what they should do. I am only supplying information.

One of the issues that I feel made the SpeechEasy controversial in our field was when it began to be touted as a cure for stuttering. Oprah had a show on “medical miracles,” and the SpeechEasy was shown. It’s not so easy as “stick this in your ear and you’ll never stutter again,” but somehow that is how things came across years ago. I think the controversy is dying down now that AAF devices are recommended as a tool that can help some people and are recommended with speech therapy for best results.

My belief is that each person who stutters is different and has a different neurological, psychological, and genetic make-up. Something is going on in the brain that causes stuttering to occur, which researchers are still trying to determine where and how. There is no one cure-all for stuttering (at least not on February 19, 2010) and people can benefit from many things or a combination of things, like cognitive therapy, physical speech techniques, AAF devices, and possibly even Pagoclone. The client needs to decide what is best for them, and we get the privilege of working with them to expose them to various things that could really be helpful and life-changing.

And finally, Dr. Ryan Pollard also responded to Dr. Kalinowski’s comment. Here is his reply:

Kalinowski and colleagues’ letter to the editor and our response to their “methodological and interpretive concerns” will be published in a forthcoming issue of the Journal of Speech, Language and Hearing Research. We encourage the interested reader to look for it.

Until then, I might point out an important error in Mr. Kalinowski’s post. He inaccurately states that, “all other peer-reviewed journal publications on the SpeechEasy revealed significant, long-lasting improvements.” In truth, two studies have reported longitudinal evidence of positive group effects. One study examined eight subjects in the laboratory after 4 months and 12 months of wearing the device (Stuart et al., 2004, 2006). Another study collected surveys from people who had already liked the SpeechEasy enough to purchase it (Kalinowski et al., 2004). Both were conducted by the developers of the SpeechEasy.

However, there are also two longitudinal experiments that were conducted in naturalistic settings (i.e., outside the laboratory) (O’Donnell et al., 2008; Pollard et al., 2009). The results from both of these studies suggest that the SpeechEasy is beneficial for some but not for others, and, importantly, the effects of the device may wear off over time for many users. There’s a term in research called “external validity,” which refers to how easily the findings of a study can be generalized to a larger population in the real world. Both our study and the O’Donnell et al. paper had relatively strong external validity because we examined subjects’ speech in the types of places where people who stutter actually live their lives.

Thanks again to Dr. Kalinowski and Ryan for offering their input. That’s a lot of point/counterpoint for you, the reader, to digest, but it’s important and relevant debate as new research continues to break ground in the field of stuttering. Let’s continue the discussion.

Have you used or do you use the SpeechEasy device? We would appreciate your thoughts and reviews.

Related posts:

1. A great research article on the SpeechEasy
2. Neuroimaging research in stuttering: Chamonix talks about studies on the brain and stuttering
3. Chamonix spotlighted by The Stuttering Brain and PediaStaff

Thank you to Craig for taking the time to share his experiences with cluttering.

Cluttering is defined as “a fluency disorder characterized by a rate that is perceived to be abnormally rapid, irregular or both for the speaker (although measured syllable rates may not exceed normal limits). These rate abnormalities further are manifest in one or more of the following symptoms: an excessive number of dysfluencies, the majority of which are not typical of people who stutter; the frequent placement of pauses and use of prosodic patterns that do not conform to syntactic and semantic constraints; and inappropriate (usually excessive) degrees of coarticulation among sounds, especially in multisyllabic words.” [1]

Many people who clutter also stutter and often have difficulty with monitoring their speech as well as reading listener’s reactions.

Cluttering has been getting a lot more attention recently with the formation of the International Cluttering Association (ICA) after the 1st International Cluttering Conference was held in Bulgaria in May 2007. The Stuttering Foundation has an informative DVD, and a fantastic new brochure was released by the International Cluttering Association to help increase awareness about cluttering.

The reality is that there are many people who clutter that have no idea that there is a name for what they struggle with. There is a growing understanding of cluttering and therapy approaches that are improving over time. We have worked with many clients who clutter and both stutter and clutter.

Have you ever heard of cluttering? According to this information, do you think that you might clutter?

1. St. Louis, K., Myers, F., Bakker, K., & Raphael, L. (2007). Understanding and treating cluttering. In E. G. Conture & R. F. Curlee (Eds.),  Stuttering and related disorders of fluency  (3rd ed., p. 297-325). New York: Thieme.

No related posts.

For more information, read this CNN article and the original article in the New England Journal of Medicine. And as Chamonix said, check back here for our reactions to this announcement and what it might mean for people who stutter and their families.

Related posts:

1. Chamonix spotlighted by The Stuttering Brain and PediaStaff
2. Neuroimaging research in stuttering: Chamonix talks about studies on the brain and stuttering
3. More discussion on research of the SpeechEasy device

For your convenience, here is a link to The Child and Adolescent Stuttering Treatment & Activity Resource Guide.

Related posts:

1. Chamonix spotlighted by The Stuttering Brain and PediaStaff
2. Chamonix explains the discovery of a genetic link to stuttering
3. More discussion on research of the SpeechEasy device

photo: Hyougushi

Susan just finished the January 2010 intensive program last week. She sent us this great story about her trip back to Indiana:

I thought you’d like to hear something funny I did yesterday in the airport. I had a long delay in Newark and then a 3-hour layover in Chicago, so I pulled out my stuttering surveys! I surveyed a whole bunch of people, and it was actually way more fun than just sitting there. I got some nice compliments on my speech, too.

Part of the reason I did this was because I wanted to prove to myself that my speech tools worked outside of NY, and they did! They worked in New Jersey and then in Chicago. It was a good way to build up a number of positive experiences for myself. On the Challenge Scale, this ranked even higher than the Subway Challenge because I had to actually approach people directly in a place where people aren’t particularly thrilled to be, and introducing myself to other people is one of the hardest things for me. I admit, in Chicago, I didn’t survey in my own terminal because I wanted to avoid potential awkwardness later on. I was surprised at how positively people responded, though. People actually seemed happy to have someone to talk to. And it was actually a little fun. I’d rather be talking to someone than sitting alone, people-watching and plugged into my iPod.

I was SO scared the first day at AIS that we surveyed in the park, but I really see the value of this activity now. I introduced myself and I also did a lot of good stuttering education, too, explaining that no, stuttering is not caused by nerves. I’d really recommend this to others to take you out of your comfort zone. Keep a survey in your purse or your wallet, and you might find a time to pull it out. Tell people it’s part of your speech therapy. People responded very positively to that because it lets them think they’re helping you in some way, and it also lets them know why you’re doing it.

It’s also a good opportunity to advertise that you stutter, so that you can more easily do it in the times when you need to. Mostly, it’s a great way to confront the fear head-on. For me, the fear of stuttering is the most crippling aspect of it, so I’m trying to do away with it.

When I finally got on the plane after all this surveying, I contemplated doing the Airplane Challenge, but you can’t exactly jump out of the plane, and you know how airlines are these days…

Thank you, Susan, for sharing your story. You’ve done an amazing job, and this is only the beginning!

Related posts:

1. The NSA surveyed 1,235 people about stuttering and therapy

And here’s a still picture of the whiteboards and the speech lobster (click to zoom):

Related posts:

1. Carl talks about motivating children who stutter to practice their speech skills
2. Stuttering in preschool children: Carl speaks to the teachers
3. Intensive stuttering therapy: Rose and Carl talk about stuttering modification strategies

Here are the drawings from the January intensive program group.

Related posts:

1. Intensive stuttering therapy: Rose and Carl talk about stuttering modification strategies
2. The June program has begun! Plus, photos from the May group.
3. May intensive program – last day

From the ages of 5 to 14, Jones refused to speak due to his severe stutter. A high school English teacher encouraged him to finally take up speaking again. And of course, it was his voice and speech that carried him to the illustrious career that he enjoys today.

Here is a recent CNN interview with James Earl Jones where he addresses his childhood stuttering and looks back on his career (he talks about his childhood stuttering at 2:47 in the embedded video below).

Related posts:

1. Stuttering in preschool children: Carl speaks to the teachers