There is an old adage in clinical and educational fields that goes something like this: Parents know their children best. This notion is borne out in recent research on language development in children, in which investigators have found that parent report of overall communication capability is predictive of a child’s later academic achievement. It is believed that parents bring a global perspective on their youngsters’ communication skills that cannot be captured in a clinical setting. It seems that parents are keen observers of their children’s strengths and weaknesses – in fact, research has suggested that parents and clinicians often agree in their assessments of a child’s communication skills – thus, making the parent a valued member of the team. Yet, when it comes to decision making in therapy, parents do not always feel included. In this column, I highlight strategies parents can use to play a role in their child’s stuttering therapy.

Ask for “talking time” with your child’s clinician.

If you don’t have regular opportunities to talk with your child’s clinician, request them. If we believe (as I do) that parents bring an important perspective to the therapeutic process and their input is essential to success, then time must be devoted to the parent, just as it is to the child. You and your child’s clinician will need to develop a mechanism for ensuring your “talking time” is preserved – whether that be in person, on the phone, via email, etc. Most important is your participation in the therapeutic process.

Record your observations (when possible).

As parents, we are observing our children all the time, but we may have trouble remembering our observations when asked about them later. I recommend writing down what you observe – not just focusing on the stuttering, but making sure to record what’s working. Take notes on the context, your child’s behavior, your behavior, how behaviors and attitudes have changed, family dynamics, etc. This can be done as brief notes that serve as reminders at your next “talking time.” For example, “…fluency best in mornings…. with family members….we use this time to practice fluency as much as possible…..and expect less fluency and talking at other times…”

Identify your priorities for your child’s therapy.

In part, the success your child achieves in therapy depends on the match between your goals and those of the clinician. The best therapy plan is one in which these overlap entirely. You and the clinician can partner to identify the top three priorities, where you would like to see your child’s communication at the end of therapy, and how your child is functioning at the present time. The process of identifying these components early in therapy serves to create a common ground for you and the clinician, and allows you to be an equal partner in determining the course of therapy.

Do your homework and don’t be afraid to ask questions.

“Knowledge is power.” Educate yourself. Find reputable sources (beginning with the NSA) and learn more about stuttering and its treatment. Seek out other parents who have experienced what you are going through. Every parent of a child who stutters has questions. Go ahead and ask! The answer may surprise you!

Nancy E. Hall, Ph.D., CCC-SLPa

There have been quite a few advancements in the treatment of stuttering over the past several years. Included in these advances are improvements in treatment outcome measures (how well someone does in therapy), advancements in the pharmacological treatment of stuttering, advances in microelectronics that have had an impact on the use of devices for the treatment of stuttering, and improvements in imaging techniques that have allowed us to examine what is happening in the brain when stuttering occurs. In spite of these advances, the two types of basic therapy remain the same. That is, one type of treatment seeks to eliminate the stuttering (fluency shaping), while the other attempts to lessen the effects of stuttering on the individual (Stuttering modification). Plain and simple, the goal of fluency shaping is to eliminate or greatly reduce stuttering. Within this area, successful treatment outcomes provided by behavioral techniques employed by parents (such as the Lidcombe Program) are very promising. The Lidcombe Progran developed by Mark Onslow and his colleagues in Australia, has documented a very high percentage of success in young children who are developing stuttering. These children have been successfully treated without any long-term side effects. It is impressive to note that these children have maintained these levels of fluency over the long term. Keep in mind that these programs have been developed for young children and do not have the same levels of effectiveness on older children and adults. Somewhat related, are the epidemiological studies conducted by Dr. Ehud Yairi and his colleagues at the University of Illinois. They have shown that many children do recover from stuttering (even severe stuttering!) throughout their childhood years. In the course of their studies, they found that recovery can occur as long as four or five years beyond when stuttering had its onset. An important contribution from their work included the term “stuttering-like disfluencies”. The term “stuttering-like disfluencies” has been used by this research team to label speech behaviors that are the most indicative of stuttering. These include partword repetitions, prolongations, and blocks. The data from these studies can be used as active predictors as to whether stuttering will continue to develop or whether recovery is likely. A knowledgeable and skilled speech-language pathologist who treats stuttering should be well versed in the work of both of these research teams. Unfortunately, there is some debate between these two groups of researchers as to whether the impressive results of the Lidcombe Program are due to the effects of intervention, or are skewed by the early recovery data obtained from the University of Illinois studies. Once again, a knowledgeable and skilled clinician can help you interpret this important data. As a starting point, skilled clinicians in your area can be sought out through the Specialty Board in Fluency Disorders. Information on speech-language pathologists holding specialist credentials in fluency disorders can be obtained at the web site www.stutteringspecialists.org. In summary, these two groups of researchers have carefully added a great deal of information to our current knowledge base of stuttering. The future will weave these two theories together to give us a better picture of the course of early stuttering. In the next several issues, I will be reviewing our discussions and answering questions on important issues related to stuttering modification, the use of fluency enhancing devices, pharmacological treatments, brain imaging studies, and anything else that you may be interested in discussing. If you have any questions in addition to those we discussed at the 2008 conference.

John Tetnowski, Ph.D., CCC

This is a great question! This is also an important question, because until we fully understand what causes stuttering, we can only treat the symptoms of stuttering. As the question implies, there is an undeniable genetic component to stuttering. If you do stutter, you’re about three times more likely to have a relative who stutters (Andrews, 1983). We also know that stuttering is not entirely genetic. Several people have been identified in the world that stutter, but have an identical twin who does not; if stuttering were entirely genetic, this would be impossible. Causation can be broken down into 3 categories:

Predisposing factors – What makes people susceptible to stuttering?
Precipitating factors – What makes people begin to stutter?
Maintaining factors – What makes people continue to stutter?

For this article, I want to talk primarily about predisposing factors. Research is teaching us more and more about stuttering. Brain scans are beginning to shed some light on how the brains of people who stutter (PWS) differ from brains of people who don’t stutter; for example, while speech and language are processed almost exclusively in the left hemisphere for the vast majority of the population (somewhere around 95%), studies are showing that brains of PWS are far more likely to have speech and language processed in the right hemisphere, or distributed more evenly between the 2 hemispheres. Alas, this is not the case for all stuttering brains; and, we can’t say whether the unusual wiring in some brains causes stuttering, or if stuttering leads to atypical brain wiring. If we abandon physiology for the moment, I have a behavioral model which I use sometimes to help students and parents better understand how stuttering may come about (and why it stays with some people and not others). Imagine that everyone is born with a certain measurable predisposition (a ‘dosage’ of sorts) for stuttering; if it runs in your family, you are likely to be born with a larger ‘dose’ than most. Now imagine that this dosage is like a stick, stuck in the bottom of a pond. If the stick is long enough, or of the water is shallow enough, we can see the stick. The length of the stick will never change, but the water level in the pond certainly can. Now imagine that the water level represents the ‘threshold’ for stuttering, and when the stick is visible, stuttering is present. The stick (stuttering) may be barely perceptible, or it may be hard to miss. The water level (threshold) can rise or fall, due to any number of factors; physiological, psychological, or environmental. Several observations make this dosage/threshold model for stuttering development compelling:

• Speech is both a language and a motor task. As language and motor skills are rapidly developing in young children, the threshold will be lowered, and indeed many young children begin to stutter. We know that girls mature more quickly, and indeed more girls ‘grow out’ of stuttering than boys. If girls do have a higher ‘threshold’, this may help explain why they are less likely to have all speech and language disruptions than boys.
• For many PWS, stuttering goes up as fatigue sets in. If the threshold is variable, then surely fatigue would compromise it. Stuttering can vary not only throughout the day, but also from week to week, or month to month. Physiological changes could impinge on the threshold; many PWS stutter more when they are in poorer health.
• If there is such a threshold, it could also be tied to fear and anxiety, which we know correlate highly with increases in stuttering. It is also worth noting that emotions are predominantly processed in the right hemisphere.
• Girls who stutter have more stuttering relatives than boys who stutter (Andrews & Harris, 1964). Likewise, girls who stutter should on average have a higher predisposition (‘dose’) of stuttering than boys who stutter. This would be consistent with the belief that girls have a higher threshold than boys (see #1). Remember that I have not addressed precipitating factors, which trigger the onset of stuttering, or maintaining factors, which allow stuttering to continue and progress. All three types of factors work together to result in chronic developmental stuttering.

Charley Adams, PhD, CCC-SLP

A. Stuttering is a problem with many inconsistencies, peculiarities, and behaviors that are sometimes hard to explain. Your observation about your son’s fluency in therapy is not uncommon… but sometimes I’m asked the other side of this question

Gary Rentschler , Ph.D, CCC-SLP, BRS-FD

We observe that the frequency of stuttering often fluctuates depending upon the situation, communication partner, and various other factors. There are considerable differences among speakers who stutter; some are impacted more by the person they are speaking with, while others have more difficulty in one situation compared to another. In stuttering clinic, clients often speak very fluently with their clinician in the clinic, yet struggle with their stuttering outside in the real world. I think a large part of this is the client feeling comfortable with the clinician in the clinical setting because “the secret” (Hey, I stutter!) is known to the clinician and everyone at the clinic. Trying to hide it usually creates additional angst and stress. This is why we sometimes encourage clients to disclose their stuttering to others, because it can reduce the tension created by worrying if the listener will react to their stuttering. In some cases, the effect is very dramatic. I have a friend I invite to talk to my stuttering class; after introducing him as a person who stutters, he has no difficulty speaking and is fluent for the entire 90 minutes! When this effect is dramatic it says to me as a clinician that the client’s feelings and emotions about his stuttering comprise a significant component of his disability. Learning to disclose your stuttering in a way that maintains your dignity can be a very valuable tool toward overcoming the impact you allow your stuttering to have. But many stutter more at home where everyone knows about their stuttering – which seems to contradict the reasons just offered. There are at least two divergent explanations for this. First, stuttering usually develops while living at home and thus home can be strongly associated with stuttering. As a consequence, it may be harder to overcome this association than other environmental factors. So the home may be the place where employing newly acquired fluency happens later, rather than sooner. An alternative explanation is that home is a “safe haven” in which the person who stutters feels secure enough to “be themselves”, feeling accepted for who they are, and loved even though they stutter. There is no need for pretense or to hide their stuttering. “I can be who I am because I am loved here.” Neither explanation carries with it any elements of good/ bad or blame; its just part of the uniqueness of stuttering.

Gary Rentschler , Ph.D, CCC-SLP, BRS-FD

Likely because she has created an atmosphere in which he feels ‘okay’ about his stuttering and they can talk about it, and work on it together. Parents sometimes feel that should be their role — the person their child can come to for anything. I once thought that I should be the one to teach my wife to drive my ‘stick shift’ car. Big mistake! So maybe there are times we need to be more pragmatic and just be thankful that our children have found someone to turn to help them with a problem. It is ironic that sometimes it’s easier telling our secrets to a “stranger” than to the ones we are closest to. Talking about our innermost secrets is not easy, but the potential benefits can be truly immense. Please recognize that both you and your son are fortunate to have this clinician as a resource – like my friend who taught my wife to drive my car, sparing a trip to divorce court!

Gary Rentschler , Ph.D, CCC-SLP, BRS-FD

This is a rather profound question because it represents three sentiments rolled into one question. These sentiments include: (1) How do I respond to others about my child’s stuttering? (2) Why does my child stutter? (3) Why does my child continue to stutter despite stuttering therapy? Each of these sentiments is worthy of a response. How do I respond to others about my child’s stuttering? One of the best things a parent can do for their child who is stuttering is to serve as positive role models of self (and stuttering) acceptance and advocacy. Stated differently, children often look to their parents to learn how they should think and feel about stuttering. If parents approach and discuss stuttering in a healthy, open, honest and shame-free manner, then the children often assume this perspective. Similarly, parents that view stuttering as shameful, ugly or handicapping may raise a child who views stuttering (and ultimately themselves) in a similar fashion. In short, it is important that parents model an open, healthy, positive, and shame-free attitude about stuttering, because this will teach many children who stutter how to think and feel about stuttering, and ultimately themselves. So when others ask about your son’s stuttering, I would suggest using it as a teachable moment for both your friend and your son by educating others about stuttering in an honest, open, empowered and shame-free manner.

Greg Snyder, Ph.D.

First, stuttering is not your fault. Please allow this to be reiterated: There is not a single piece of credible research suggesting that parents can cause stuttering. Period. Second, stuttering is not your child’s fault. There is no credible evidence suggesting that stuttering is caused by some type of character flaw or psychological weakness. While researchers cannot definitively cite the cause of developmental stuttering (or persistent developmental stuttering), research is pointing towards genetics and neurological processing errors as the likely causal culprits.

Greg Snyder, Ph.D.

When we do not know what causes stuttered speech, it is exceedingly difficult (if not impossible) to reliably “cure” stuttering. However, approximately 80% of young children naturally outgrow stuttering within about 1 to 5 years from onset; unfortunately, researchers and clinicians are currently unable to reliably predict which children will and will not outgrow stuttering. Consequently, most preschool-aged stuttering therapy programs are designed to foster this natural recovery process from stuttering. And as an aside, parents should feel free to ask questions (and particularly this question) to their speech pathologist. Any proficient Speech Language Pathologist (SLP) knows this question is coming, and they should be prepared with a thoughtful and accurate response. Further, parents should not be afraid to trust their instincts; sometimes, changing SLPs may be beneficial for everyone involved. This should not be interpreted that the original SLP was ineffective or otherwise inadequate, but rather to suggest that a change in perspective and approach may result in better results. Ultimately, current stuttering therapies can provide powerful results in managing (i.e., limiting) stuttering behaviors, but since the precise cause of stuttering remains unknown, stuttering therapies continue to struggle at eliminating the pathology altogether. So in conclusion, an open, honest, educated, empowered and shame-free attitude toward stuttering is a great path to follow as you raise a child who is stuttering. Using questions from others as teaching moments to demonstrate stuttering awareness, acceptance and advocacy will also create a positive foundation for your child’s development, regardless if your child recovers from stuttering or not.

Greg Snyder, Ph.D.