Questioning the traditional dichotomy between direct versus indirect treatment in stuttering for young children who stutter.
The deeper my understanding of stuttering grows, the more I understand the crucial role parents and caregivers play in the quality of life of children who stutter. This understanding has also sharpened my focus on the direct role of the speech-language therapist in equipping parents and caregivers. As a result, I’ve begun to question the traditional dichotomy between direct versus indirect treatment in stuttering for young children who stutter.
SLPs are uniquely qualified to promote the well-being of children who stutter by guiding caregivers to cultivate healthy communication environments at home. In a recent conversation with a colleague discussing my implementation of Palin Parent-Child Interaction Therapy (Palin PCI) with young children who stutter, I emphasized its value in helping families explore their inherent strengths and identify what contributes to healthy communication and well-being in their homes. For those unfamiliar with Palin PCI, the approach utilizes video feedback to help caregivers recognize their natural strengths and increase these positive behaviors during interactions with their children. Through this process of self-discovery, caregivers might notice they naturally use more pauses while speaking, naturally leading to a comfortable and unhurried speaking pace. Or they might notice they naturally listen attentively to their child with minimal interruptions. Similarly, though identifying less helpful behaviors are not the focus of this approach, caregivers might also discover less beneficial tendencies, such as frequent interruptions or rushed transitions, that don’t contribute to positive communicative interactions. They may choose to work toward minimizing these tendencies to actively develop new strengths that enhance their communication with their child, whether or not they continue to stutter.
During this discussion, my colleague commented that her families tend to seek a more “direct approach” to treatment, questioning whether they would respond to what she viewed as a more “indirect approach.” I left that conversation puzzled and a bit rattled because family-centered treatment IS direct treatment! I believe a caregiver-directed approach is direct intervention at the most fundamental and powerful level. How could we not consider it a direct approach when we're fostering positive changes in caregiver behaviors that positively impact the child - especially given that caregivers are the most influential and constant adult presence in a child’s life?
The Oxford dictionary defines indirect as “not directly caused by or resulting from something,” however, the intentionality evidenced by caregivers engaging in active environmental and/or interaction strategies (focused on themselves and the communication environment, not on the child stuttering less) absolutely results in positive communication changes in the home, so can we stop calling family-centered, family-directed treatment indirect treatment? ASHA defines direct care as “evaluation, treatment, or counseling completed in the presence of an individual and/or their caregivers.” Bottom line: The face-to-face, personal, and firsthand engagement of caregivers in the therapeutic process, where they focus on their growth and improving the environment, is direct treatment. Furthermore, reduced parental anxiety and worry are often the first observable signs of progress (Miller, 2018), so caregiver education, support, and empowerment are critical components of effective treatment.
Allow me to offer a few examples of intentional environmental and interaction strategies that promote healthy communication environments at home and the classroom for children who stutter. For therapists, parents and caregivers, and teachers, these might be:
Making Space for Children Who Stutter - This might be using a talking stick to give the floor to a child who may not easily achieve entrance into a conversation or discussion. It could also be a verbal cue such as, “I think Johnny has something to say…” or “Go ahead Johnny, I’m listening…” or “It’s Johnny’s turn to share…”
Holding Space for Children Who Stutter - Holding space goes hand-in-hand with making space for children to speak, and it may involve physical or verbal cues to allow time for a child to finish. It could be a simple hand gesture signaling “wait” or “hold on” or a verbal cue such as, “Johnny is not finished…” or “It’s still Johnny’s talking turn…” or “Please wait for your turn…” or “I’m listening to Johnny’s voice right now…”
Modeling Unhurried Transitions - Whether it be transitioning from one topic to another, from one conversational partner to another, or from one activity to another, rushed transitions generally create time pressure. Time pressure may contribute to competition for talking time and/or pressure to speak quickly (i.e., “spit it out”), which may exacerbate stuttering.
Open-Ended Prompting - Open-ended prompting or non-question starters in conversational turns, such as “I wonder..., I bet..., I noticed…, Tell me more…,” lend themselves to a more relaxed and inviting communicative exchange, where there’s less pressure to generate answers quickly, precisely, or on the spot.
Taking Time to Respond - Modeling “thinking” and non-immediate responses provides the child an example of taking time to respond without impulsivity or rushing.
Listening Attentively - Children know when the adults in their lives are physically present while cognitively or emotionally absent. Remove or lessen distractions when engaging with your child and demonstrate attentive listening through your words, actions, and body language.
Valuing the Message - We can demonstrate valuing the message rather than the form (i.e., way of talking) by actively listening to children, whether or not they’re stuttering. We can fill in the gaps of time with patience and simply listen without rushing or interrupting. This may also mean verbally acknowledging to the child who struggled to get their words out, “That seemed hard but I'm so glad you told me anyway…” or validating the child who might be likely to give up and stop talking, “I'm so glad you finished and told me that story…”
Across all these strategies, the resounding message for children who stutter is KEEP TALKING!
Millard, S. K., Zebrowski, P., & Kelman, E. (2018). Palin parent-child interaction therapy: The bigger picture. American Journal of Speech-Language Pathology, 27(3S), 1211–1223. https://doi.org/10.1044/2018_AJSLP-ODC11-17-0199
Spero Stuttering, Inc. (2024, May 18). Nurturing and empowering your child who stutters [Video]. Youtube. https://youtu.be/GPjKPYUB9qw
Reflection on "The Power of Listening" in the field of speech-language pathology.
In nearly 25 years of clinical practice as a speech-language therapist, listening is the most important skill I’ve had to learn and cultivate on an ongoing basis. Listening skills may appear to be an obvious prerequisite for any therapist, or perhaps it’s an assumed quality that therapists possess, but what does it really mean for a therapist to demonstrate traits of an effective listener?
I have learned most about the art of listening through my involvement and work in the stuttering community. Meeting and working with people who stutter has opened my eyes to the vital need for communicative environments where listening is prioritized and valued.
In the therapy world, whether we call it reflective listening, empathic listening, or active listening, this kind of listening means we seek to listen with understanding, that is, understanding what the speaker is truly feeling and experiencing (Rogers & Roethlisberger, 1952).
The late Carl Rogers (1952) calls this “understanding with a person, not about her.” He defines it as “seeing the expressed idea and attitude from the other person’s point of view, sensing how it feels to the person, achieving his or her frame of reference about the subject being discussed” and being “willing to enter his private world and see the way life appears to him, without any attempt to make evaluative judgments” (Rogers & Roethlisberger, 1952).
Each time a client shares their story, it’s a privilege to be invited into their world—to see life through their eyes. This deep listening—understanding WITH a person rather than merely about them, and without judgment—is transformative in therapy. When we as therapists engage in this way, we create a safe space that encourages our clients to open up further. They begin to share more deeply, express themselves more freely, and experience a genuine sense of being heard, perhaps for the first time.
Rogers also asserts that if we can listen with understanding and “catch the essence” of a person’s hatreds and fears, we will be “better able to help them alter those hatreds and fears and establish realistic and harmonious relationships with the people and situations that roused such emotions” (Rogers & Roethlisberger, 1952). This concept is so applicable to the stuttering experience, so let’s examine further.
Learning from the lived experiences of people who stutter (Tichenor & Yaruss, 2019), we know that stutterers often grapple with complex emotions. These can range from anxiety and frustration stemming from challenging speaking situations to guilt and shame due to societal stigma and unrealistic fluency demands. Many also experience fear and isolation, feeling alone and disconnected from others due to their stutter. In the face of profound and deeply rooted emotions, speech-language therapists have a unique opportunity. By listening with empathy and understanding, we can guide individuals who stutter to explore and reframe their relationships with the people and situations that evoke such intense emotional responses.
Itzchakov and Kluger (2018) highlight Rogers’ theory that “when speakers feel that listeners are being empathetic, attentive, and non-judgmental, they relax and share their inner feelings and thoughts without worrying about what listeners will think of them. This safe state enables speakers to delve deeper into their consciousness and discover new insights about themselves—even those that may challenge previously held beliefs and perceptions.”
Reflecting on this concept, again I consider the experiences of our clients who stutter. They often find themselves in communicative spaces that feel unsafe, where listeners are not empathetic, attentive, or non-judgmental, and are thus hindered in their ability to communicate freely. By contrast, therapists who engage in the art of listening can go against the grain by creating safe communicative spaces that open the door to self-reflection and growth.
We must beware, however, of potential barriers to listening that might keep us from unlocking deeper understanding in our interactions and sessions with clients. Four main barriers warrant our attention:
The art of listening in speech-language therapy, especially for those who stutter, is paramount. It transforms therapy rooms into places where individuals who stutter can safely explore their experiences and challenges and reshape their relationship with stuttering. As therapists refine their listening skills, they not only improve clinical outcomes but also model the patience and acceptance that clients may struggle to find in their daily lives. As we continue serving people who stutter and their families, may we learn and practice listening with understanding, that our clients may truly feel heard!
Lists ways SLPs can demonstrate “severity” of stuttering as well as tangible growth and progress based on affective and cognitive factors rather than visible stuttering behaviors.
As SLPs demonstrate the necessity and value of the services we provide for people who stutter, we must look beyond percentages of stuttered speech as the primary measure of “severity” and/or progress.
We can begin by using the ICF model on the experience of stuttering (Tichenor & Yaruss, 2019) to demonstrate the totality of stuttering, and we can demonstrate progress based on assessment measures related to increased life participation, improved quality of life, and reduced negative impact.
If we as professionals only consider disfluency counts and erroneously ignore the entire condition of stuttering, we invite potential negative outcomes for the individual, especially children who stutter.
There are many ways SLPs can demonstrate “severity” of stuttering as well as tangible growth and progress based on affective and cognitive factors that are unrelated to visible stuttering behaviors (or “quantifying” stutters). Additionally, no single measure or assessment should be used as the sole criterion to determine eligibility and need for speech services.
Need ideas on evaluation tools to assess stuttering holistically? Here are some options that may be considered, depending on the individual’s age and circumstances, which dive into impact, participation, communication apprehension, stuttering anticipation, emotional reactions and attitudes, coping responses, and quality of life:
Here are key questions to consider in relation to educational impact for a child or adolescent who stutters (Wisconsin DPI, n.d.):
Let’s move beyond disfluency counts in our comprehensive assessments!
Tichenor, S.E. & Yaruss, J.S. (2019). Stuttering as defined by adults who stutter. Journal of Speech, Language, and Hearing Research, 62, 4356-4369.
Wisconsin Department of Public Instruction (DPI). (n.d.). Assessment of fluency. https://dpi.wi.gov/sites/default/files/imce/sped/pdf/sl-asses-fluency-doc.pdf
Reflection on how stuttering allies and advocates can help end hurtful stereotypes.
The public mockery of stuttering causes immense harm and perpetuates hurtful stereotypes. Stuttering is a speech condition affecting people of all ages and backgrounds worldwide, and it is time we address the stigma surrounding it (again!).
Every person deserves to express themselves without fear of ridicule or discrimination. Stuttering is not a joke; and those who stutter already face enough challenges in their daily lives without the added burden of public humiliation.
By mocking stuttering, we not only hurt individuals directly affected by it but also send a message to the wider community that it is acceptable to ridicule those who are different. This perpetuates a cycle of bullying and exclusion that has no place in our society.
We urge everyone to stand up against the mockery of stuttering in the public sphere and within our everyday circles. Let’s promote empathy, understanding, and acceptance. Let’s work toward creating a world where people who stutter feel valued and respected.
Together, we can put an end to the stigma surrounding stuttering and create a more inclusive and compassionate society for all. Together, we can make a difference!
How can stuttering allies and advocates help end hurtful stereotypes?
Who do we educate within our everyday circles?
- Our fellow peers
- Our colleagues and co-workers
- Our workout or yoga buddies
- Our golf or pickleball partners
- Our book club friends
- Our happy hour crew
- Our cooking or baking besties
- Our card-playing or board game amigos
- Our scrapbooking, painting, or knitting pals
- Our binge-watching buds
- Anyone and Everyone!
"A man dies when he refuses to stand up for that which is right. A man dies when he refuses to stand up for justice. A man dies when he refuses to take a stand for that which is true." Martin Luther King, Jr.
Let's not be silent about things that matter. Start the conversation today. Let’s end stuttering stigma!
Encourages SLPs to challenge and seek to change outdated and inappropriate eligibility guidelines that do not account for the entire stuttering experience.
It is disheartening when we hear that school-based SLPs are still being required to base eligibility for services for children who stutter solely (or primarily) on percentages of observable disfluency.
As our understanding of the speaker’s experience of stuttering increases via research evidence, patient evidence, and clinical practice, eligibility criteria for receiving stuttering services in the schools must be analyzed and challenged.
A Deeper Dive into the Regulations
First, we know that the Individuals with Disabilities Education Act (IDEA’04) mandates state education agencies and local school districts to provide special education services to eligible children ages 3-21 in order to provide a free, appropriate public education (FAPE). The question of “need” for children with communication challenges is tied to how the communication disorder or difference adversely impacts their educational performance. Demonstrating adverse impact on educational performance can become a tricky endeavor for school-based SLPs, particularly for children with good grades, or when eligibility guidelines are outdated and not informed by current evidence-based practice.
Let’s look at the first issue - when professionals limit “educational performance” to showing discrepancies in performance in academic subject areas. This dilemma has caused ASHA to seek guidance from the Office of Special Education Programs (OSEP) on multiple occasions. Over a span of 30 years, OSEP’s responses (dated 1980, 1989, and 2007) have affirmed that whether a speech and language impairment adversely affects a child’s educational performance cannot be strictly based on discrepancies in age or grade performance in academic subject areas.
An excerpt from one response letter states: “The extent of a child’s mastery of the basic skill of effective oral communication is clearly includable within the standard of ‘educational performance’ set by the regulations – that is, academic failure is not a prerequisite for services. It remains the Department’s position that the term ‘educational performance’ is not limited to academic performance. Services cannot be denied as a matter of policy because the adverse effect on educational performance is not reflected in grades or academic achievement.”
IDEA regulations and OSEP deem educational performance to mean more than grades, therefore, in addition to academic performance, we must look at adverse educational impact in terms of the functional, developmental, social-emotional, and nonacademic needs of the child.
Practical Guidance Summary: Satisfactory academic achievement is not a reason to exclude children from receiving services for stuttering.
How to Gauge Adverse Impact
For a bright child who stutters, the functional, social-emotional, and nonacademic effects of stuttering that adversely affect educational performance may be, for example:
Outdated Eligibility Criteria
Now let’s look at outdated eligibility criteria that place too much weight on disfluency counts. First, in accordance with the long-accepted iceberg analogy of stuttering (Sheehan, 1953; Sheehan, 1998), we have come to understand that the visible aspects of stuttering (i.e., disfluencies themselves and secondary behaviors) are only a small part of the stuttering experience. The invisible aspects of stuttering, such as negative thoughts, feelings, and emotions, and the ways in which these impact a person’s self-perception, confidence, and actions, comprise the much larger part of stuttering. In Diagnosing Stuttering in the School Environment (2002), Michael Susca, professor and stuttering specialist, affirms that the majority of stuttering is unobservable.
Recent research based on the lived experience of individuals who stutter confirms that stuttering encompasses much more than the visible behaviors (Tichenor and Yaruss, 2019). With this understanding, Tichenor and Yaruss (2019) proposed an updated ICF (International Classification of Functioning, Disability and Health) model for the complex experience of stuttering to outline the perceptions and lived experiences of people who stutter. This ICF model presents the sensation of being stuck or losing control as a primary symptom of stuttering, and it also includes the individual’s behavioral, affective, and cognitive reactions and responses as well as activity limitations, participation restrictions, and environmental factors as part of the stuttering experience, all of which may significantly impact quality of life. Furthermore, Tichenor and Yaruss (2019) indicate that frequently perceived behaviors during moments of stuttering, such as the sensation of being stuck, the feeling of loss of control, as well as choosing not to speak or removing oneself from a speaking situation, are difficult to observe from the listener’s perspective. In 2022, Tichenor et al. contended that the primary aspect of stuttering is what the speaker experiences, rather than what the listener sees or hears.
So What Does it all Mean for Evaluation and Eligibility?
Susca (2002) suggests that asking key questions “may reveal the presence of a stuttering disorder without the presence of observable symptoms.” Susca also states that a standardized diagnostic assessment alone is “insufficient and in direct violation of the intent of IDEA ’97.” [Currently used: IDEA 2004]. With this in mind, let’s summarize what this means for SLPs in the public schools.
A. Evaluating the “severity” of stuttering for the purpose of diagnosis and determination of eligibility for school-based services cannot be limited to listener perceptions of the frequency of stuttering in a person’s speech.
B. Additionally, the expectation and pressure for fluency often leads individuals who stutter to attempt to hide their stuttering, even from an early age, and these covert tendencies can mask visible stuttering behaviors albeit severe and crippling impact may be present.
C. Therefore, appropriate eligibility determination criteria for services for stuttering should include:
A wise man once said, “Not everything that counts can be counted, and not everything that can be counted counts.” If we as professionals only consider disfluency counts and erroneously ignore the entire condition of stuttering, potential outcomes for the child who stutters may be: 1) reinforcement of their fear of talking and fear of stuttering; 2) reinforcement of avoidance of words, people, and situations; 3) limited social skills and interaction with others; and 4) lowered educational achievement due to avoidances and participation restrictions.
It is up to us to challenge and work to change outdated and inappropriate eligibility guidelines that do not account for the entire stuttering experience. It may not be easy, but it will certainly be worth it because children who stutter deserve better!
Personal account of the importance of maintaining a child's home (heritage) language, even in the presence of communication challenges or delays.
inging, writing, reading, traveling with her husband and kids, and fostering her children’s bilingual journeys.
X’unei Lance Twitchell, professor of Alaska Native Languages and language revitalization advocate, once said, “Our language is everything. It’s the air we breathe. It’s the blood that flows through our veins” (as cited in Ohle & Bartels, 2016, p. 2). I did not come to understand the depth and beauty of these words until the end of my parents’ lives.
It was a normal Spring Friday in May of 2019 when I got the call. My niece’s birthday dinner was interrupted with the news that my mom had suffered a car accident. Another unexpected occurrence in a line of unusual and recent events—getting lost driving to a friend’s home, dressing herself in mismatched clothing, misplacing and losing cash, forgetting everyday things. She was already scheduled to see a neurologist, but long waitlists made the appointment a bit far off. When I arrived at the hospital in Texas, I was not prepared for what I was going to hear. A CT scan revealed glioblastoma in an advanced stage, one of the most aggressive and deadliest types of primary brain tumors. I sobbed uncontrollably in the waiting room, unable to contain my sorrow in that moment. She was scheduled for surgery shortly after, but the prognosis for survival or quality of life post-surgery was grim. All we could do was surround her with love, care, and the assurance that we would walk with her through this diagnosis.
The surgery was as successful as it could have been, but behavioral changes due to impacted areas of the brain were quickly evident. Even so, she was happy to be alive, and we were hopeful that she would become strong enough for chemotherapy in the near future. Within two weeks, however, she developed shingles, and the outbreak kept her confined to her rehabilitation room. We were not prepared for the quick decline within that period of quarantine and isolation, as she went from walking with the assistance of a walker to needing the aid of a wheelchair. My siblings and I were still present with her daily, though through a regimen of safety procedures including the use of gloves, protective clothing, and sanitation. We watched her favorite TV shows, read the Bible and sang hymns together, and had pleasant conversations about our lives and her beloved grandchildren. We were still hopeful for recovery and more time with her, but within 6 weeks, the cognitive and behavioral changes were even more pronounced, and she entered a state of terminal restlessness, where she was intensely agitated, often scared, and filled with anguish. Her medical team provided comfort through gradual sedation, and we knew the end was near.
One hot Sunday afternoon in July, our dad, who was living in the same nursing facility due to advanced Alzheimer’s disease, became adamant that he wanted to see her. Due to his memory loss, cognitive decline, and agitation, I was a bit concerned that he wouldn’t understand why she would be lying there unresponsive, but his words and actions demonstrated he needed to see her. When we stepped into the room, to my utter shock, he was completely lucid. In that moment, he understood exactly what was happening. I was able to briefly explain the events of the past few weeks—the diagnosis, the surgery, the post-surgical illness, and her speedy decline—all of which he had been largely oblivious to prior to that moment. We both cried as he held her hand and stroked her arm in disbelief. He poured out his heart, professing his love for her and the sorrow he felt in our helplessness to save her. It was the most gut-wrenching yet beautiful moment I have ever witnessed. I firmly believe God granted him a moment of lucidity in order to say goodbye. My mom passed away the next morning, and he had no recollection of what transpired the night before.
Returning to Twitchell’s beautiful quote, what does all of this have to do with language? You see, all the events I just described occurred in our native language, Portuguese. When we immigrated to the US when I was 10, my mom was adamant that we maintain our Portuguese skills. She intuitively knew that if we (her children) lost our ability to speak Portuguese, we would have become like strangers in our own home. It took my parents years to learn and feel comfortable speaking English, and even though there was outside pressure for us to “switch to English” at home so that their English would progress faster, Portuguese remained our language of communication. It was a non-negotiable for my parents because that was our HEART language. That was the language my parents could fully express themselves in—their love, care, beliefs, values, fears, aspirations—everything that was important to them. In 30+ years of living in the US, our language of communication was always Portuguese. English interactions with them felt awkward and unnatural. Imagine that Sunday afternoon with my dad had I lost my ability to speak Portuguese? I wouldn’t have been able to capture that divine and beautiful moment or been a source of strength for my dad in his hour of grief.
Three months after my mom passed, I was invited to speak at the Brazilian stuttering association conference due to my work as a speech-language pathologist and advocate for the stuttering community. We were debuting a documentary film produced by a colleague entitled, WHEN I STUTTER, which provides educational vignettes about stuttering and details the lived experience of stuttering through the lens of multiple individuals who stutter. With the help of a Brazilian colleague, we translated the film into Brazilian Portuguese and launched its release in honor of International Stuttering Awareness Day (ISAD), which occurs every October. As I stood there in my homeland speaking before a large audience of Brazilians, I couldn’t help but think of my mom. I was overwhelmed with a sense of awe and gratitude for her foresight and care to pass down our language and culture. Because of her, my Brazilian heritage is of great value to me, and I have continued to enjoy the rewards of my Portuguese skills through other professional collaborations involving translation, research, and scholarly works.
My dad’s Alzheimer’s continued to progress after my mom’s passing, and he became more and more disoriented, agitated, and disconnected. Conversations with him were surface level and repetitive interactions, but he still enjoyed being read to, listening to Portuguese music, singing, and recounting distant stories from his past. At one point it was evident that he either lost his ability to speak English, or at the very least, his desire to speak it. It seems that some language loss did occur because he often seemed confused when nursing staff spoke to him in English, and he even appeared scared at times when he didn’t know what was being said or asked of him. This sometimes led to “combative” behaviors and unpleasant interactions with English-speaking health care professionals, and his care became harder to manage. In those moments of confusion, agitation, and combativeness, the only thing that would pacify him was a familiar voice speaking a familiar language. We found amazing Brazilian caretakers that were willing to assist with his daily care in the nursing facility, and that improved his quality of life significantly. In the end of his life, the soothing balm, if you will, was Portuguese, and the ability to interact with his Brazilian caretakers, friends, and children. Because we (his children) maintained our home language—our heart language—we were able to actively help and meet his needs in his final season of life when he needed us most. My dad passed away on his birthday in December of 2020, but I am filled with gratitude for the time we had together on this earth.
Language truly is everything. It’s the blood that flows through our veins. I dedicate this writing to every parent who is passing down their language and culture to their children, particularly if your community language is more prestigious and different than your home language. Your journey is often hard and mundane, but your intentional and dedicated efforts will produce great rewards!
Reference:
Ohle, K., & Bartels, J. T. (2016). Using dual-language books to preserve language & culture in Alaska native communities [Conference session]. Alaska Native Studies Conference 2016, University of Alaska.
Explores the role of the SLP in stuttering treatment considering "One Size Does NOT Fit All."
When we consider “One Size Does NOT Fit All” as speech-language pathologists (SLPs), what is our role in stuttering treatment?
Conventional wisdom in the sub-field of stuttering evaluation and treatment calls on clinicians to meet their clients (and families) where they are. Change cannot be forced on anyone, and as clinical psychologists William Miller and Stephen Rollnick have argued, those who are not yet ready to change will simply supply their own arguments against change (Miller & Rollnick, 2013). This will inevitably lead to behaviors which support those arguments. In other words, change must begin internally, manifest its readiness in language, and then lead to sustained action. This view comports with the available research and encourages speech therapists (in our case) to start with the client rather than a preconceived and rigid plan of action. One size simply does not fit all.
Yet, there seems to be some confusion over the well-known principle: meet clients where they are. Many in the field use this language synonymously with a call to “do as clients wish,” whatever the request and whatever the consequence, thus decontextualizing its potential benefits. It is this latter implicit direction which fails to take into account the very nature of stuttering and its impact. An open-ended conversation with a person who stutters can yield the problems associated with stuttering: shame, guilt, embarrassment, fear, anxiety, saying less, staying home, hiding, hopelessness, concealment, unwanted thoughts, diminished self-worth and confidence, dread of conversation, and physical exhaustion. While this list is far from exhaustive, it is intended to paint a picture of a life which is ruled (in many cases) by stuttering or even the possibility of stuttering–a life in which decisions are made to minimize social stigma and other potential consequences of being a person who stutters. The bad news is that these are not hypothetical consequences for stuttering in our day and age. The good news is that none of these consequences are endemic to stuttering and thus, can be discarded and changed if desired.
Speech therapists possess a unique mixture of specialties in motor speech, counseling, pragmatics, and behavior change, and are in an excellent position to support people who stutter. We can do this by asking open-ended questions to elicit their personal experiences, challenges, resources, and hopes, all from the perspective of a person who stutters. However, we do not merely want to understand their problems or the nature of their problems. We also want to understand the types of change (if any) they desire to make. Broadly, this may sound daunting, or conversely, intuitive until beginning the conversation, only to find that this is easier said than done.
Given the nature of the problem, it is important to know how the client views his or her communication and what he or she is prepared to do about it. The response by most newer clients (or families) is that stuttering is the problem and fluency is the solution. In most cases, clients have not considered the problem beyond these bookends: stuttering and fluency. Many clients appear to lack an imagination beyond an undefined future hope: fluency. When asked what this would mean for them, many struggle to expound on their initial responses. “What would your family notice (or notice you doing) if you didn’t stutter anymore?” Many respond, “Well, they would notice that I’m not stuttering.” This response and many like it evidence a belief that there are only two choices: to stutter and live as “broken” or find fluency and finally begin to live. These choices will be expressed in myriad ways but evidence the same core belief that speech fluency is the only way out of their problem(s). If clinicians simply “give the client what he/she wants,” it will feed these false beliefs and reinforce the notion that fluency will give them what acceptance cannot. If we, instead, pivot to probing their experience of stuttering and the future they envision (if stuttering were no longer an impediment to living the life they want), both client and therapist will begin to peel back the facade of the “fluency solution” and discover the gems hidden below the surface. We simply have to be willing to mine with them.
We intend to argue in this paper that it is the job of the therapist to elicit insights into the nature of stuttering and explore associated problems with clients and to illuminate the variety of choices for communication with guidance in achieving whatever desired outcome is expressed. The key is “informed desired outcome,” but what do we mean by this? As aforementioned, sometimes the individuals we serve, young and old, come to speech therapy with a valid desire, even need, for fluency that is often informed by a limited view and understanding of stuttering. This is heavily influenced by recurring negative listener reactions, trauma experienced due to stuttering, cultural views surrounding differences, societal norms of what is acceptable or preferred, as well as internal and external pressures for fluent speech. Let’s imagine for a moment the first time one experiences the ocean. What’s the difference between swimming in a lake versus swimming in the ocean? You might be content with lake water if you know nothing different, but once you’ve seen and experienced the clarity and beauty of the ocean, it’s unlikely you’ll desire lake water again. What if our role as SLPs was to guide our clients/students to see the beauty of the ocean of spontaneous and joyful communication rather than remain in the murky waters of fluency at all costs? A shift of this sort would see SLPs as guides in expanding a client’s imagination of what is possible, slowly removing the blinders to enable them to see the panorama. Seeing a possible preferred future which was previously unimaginable can lead to hope, the belief that what is possible might be probable. And increased hope can lead to genuine choice. After all, who chooses an option which they believe is not truly possible?
It is here that an important qualifier must be added and that qualifier is this: each client brings unique personal experiences, readiness, personalities, values, and personal resources which will impact and inform the change(s) they make. It should be noted that this is an aspect of meeting clients where they are which should be upheld. Clients must have complete autonomy over their treatment and the pace of the work, even while clinicians play a role in shaping that experience and coaching or guiding clients toward their preferred future.
Joze Piranian, speaker, comedian and person who stutters, presented a similar idea with a different lens when giving a keynote address at the 2023 NSA conference. He shared a quote by Persian poet Rumi, which speaks to the work we do with people who stutter, “Why do you stay in prison when the door is so wide open?” As SLPs, it’s a beautiful picture of the power of treatment when we help people finally see wide open doors in order to come out of whatever “bondage” they find themselves in (i.e., limitations, restrictions, confinement due to stuttering).
In a recent video depicting positive outcomes of effective speech intervention (https://youtu.be/l4pddgtEH3g), Mike conveys such a powerful message, stating, “After my perspective changed, I pretty much stopped worrying about it (stuttering), which is really something I’ve been seeking my whole life which I didn’t even know that I was seeking for it, so it was a huge help in just a perspective change on my entire social interactions.” Mike didn’t even know that what he was seeking in treatment was freedom–freedom from a mind consumed with stuttering (or not stuttering), freedom from the shame he experienced, freedom from the pressure he felt to speak fluently and never stutter, and to “get this fixed” so he could finally achieve his goals. For the first time, Mike understood the false dichotomy between “either fluency or…dating/marriage, a career, friendship, participation, independence (or fill-in-the-blank).” He describes this change as an inward change–an inward change he never knew was possible. In other words, his speech therapist helped him consider possibilities and outcomes he didn’t know existed. If his therapist’s approach had been to simply give him what he wanted (i.e., tools to reach fluency), his vision for his life would have remained restricted and narrow.
We will presume you are fully convinced by this line of argumentation and speak to the “how” of expanding realms of possibility in everyday life. Motivational interviewing and solution-focused brief therapy provide helpful models of questioning which ask the client to “use your imagination” to discuss what might be different if the problem were suddenly gone. The focus is on positive solutions to the problem at hand, what the person would be doing that he or she is not doing now, or is doing now but might hope to do even more. The therapist reflects these responses back and provides additional questions to “mine” for concrete behaviors (gems) which might become actionable. For example, responses such as “I would be happy” or “I wouldn’t feel so afraid” are insightful but offer no clear opportunities for concrete change. The clinician might then ask, “If you were happy, what would be different?” or “If you felt happy, what would that free you up to do?” Solution-focused therapy often utilizes the question, “And what difference would that make?” or “Suppose that happened, what would be different?” to delve further into this hopeful future. These conversations often generate lists which can be shaped into goals and insights into the changes a client would like to make. I want to talk more, I want to give better eye contact in presentations, I want to have fuller conversations (rather than cut them short or say as little as possible), I want to ask questions in class. These responses reach far beyond “fluency” and into the everyday life of a client. In the same way a client may state, “I want my stuttering to go away” or “I want to be more fluent,” a client may also state, “I want to introduce myself to new kids at school.” Unless SLPs ask the question, many people who stutter might never share these hopes. Indeed, a client might never voice these hopes because he or she does not consider them worth uttering. The key is taking small, tangible steps over time which lead to meaningful changes. Books and articles by William Miller, Stephen Rollnick, Kidge Burns, Insoo Kim Berg, and Steve de Shazer, can help to flesh out the methods discussed briefly in this paper in greater detail.
In summary, “One Size Does NOT Fit All” means that it’s not only ethical and reasonable for SLPs to serve as guides to worlds unexplored, but it is our role and responsibility to do so. We carefully cultivate a culture in which change is viewed as possible and in which desires, needs, and hopes can be actualized within and beyond the therapy room.
Addresses changes needed in SLP preparation and the call to "Speak the change you wish to see."
In 2015, I found myself with 15 years of experience as a speech-language pathologist (SLP) and yet felt completely ill-prepared and lost when my son began to stutter. How could I as an SLP be utterly lost when facing my son’s stutter? Change is needed.
Later in 2015, I found myself as an SLP trainee at an overnight camp for nearly 60 youth who stutter. Though I felt completely out of my element and learned more about stuttering in a week than I remember learning in my graduate school Fluency Disorders course, it was a life changing experience both personally and professionally. I left that experience thinking, how can more SLPs experience the magic of a place like this? Change is needed.
At a conference in 2018, I was surrounded by parents of children and teens who stutter, and I realized for the first time how many parents aren’t aware of the limited training SLPs receive to work with people who stutter. I also realized that so many families don’t have access to specialists in the area of stuttering, and they don’t quite know what to look for in a generalist who knows more about stuttering than the average SLP. How can we connect families with SLPs who are knowledgeable and confident working with children who stutter? Change is needed.
By 2019, I had experienced first-hand the power of support organizations for people who stutter both nationally and abroad. I realized that so many people who stutter often go years and years without ever meeting someone else who stutters. They often find themselves alone and isolated from people who truly understand the experience of stuttering. How can we connect families and individuals with more sources of support and community? Change is needed.
Circling back to the preparation of SLPs, in the last year I have learned from recent studies that have been very eye opening (see reference list). I learned that in 1997, 59% of graduate students in the field of speech-language pathology could graduate without any clinical experience in stuttering. There was an increase to 65.1% of graduate students without clinical experience in 2000, but then thankfully a decrease to 31.5% in 2013. Though we see a higher percentage of students graduating with clinical experience, it was reported that clinical hours in the assessment and treatment of fluency disorders are guided by less experienced clinical supervisors. Change is needed.
In terms of coursework, 17.8% of students could graduate without taking any courses exclusively devoted to fluency disorders in 1997. There was an increase to 22.6% of students in 2000, but then a decrease to 14.2% in 2013. This means a lower percentage of students graduating without coursework devoted to fluency disorders, however, 9.6% of programs still reported having no required or elective graduate course in fluency disorders. Thus, the number of programs providing minimal education about fluency disorders remains high. While the 2019 survey of graduate students showed an increase in knowledge and comfort levels by students, they still reported not having adequate knowledge with regard to administering assessment tests or differentiating between various types of treatment. Results showed students still felt uninformed or uncertain about fundamental aspects in fluency disorders. Change is needed.
In 1997, SLPs indicated that graduate and undergraduate courses mainly stressed theory and treatment was less emphasized. In 2000, there was a reported increase in the number of programs that emphasized clinical application in their graduate courses, rather than focusing primarily on theoretical issues and background. Even with this positive trend, the 2008 study of SLPs showed that 50.8% of SLPs could not differentiate between the two main approaches to stuttering therapy and 46.5% were not comfortable working with children who stutter. Let that sink in…nearly half of the SLPs surveyed were not equipped to work with people who stutter. Additionally, 66.4% did not use attitude scales to assess stuttering, which means a large focus on the behavioral aspects of stuttering while ignoring the affective and cognitive aspects of stuttering as well as its impact on the individual. Change is needed.
In summary, even with many years of experience, studies show that stuttering is a low preference disorder among SLPs and that a vast number of SLPs feel inadequate and uncomfortable treating stuttering.
CHANGE. IS. NEEDED.
All these studies point to a call for the better equipping of graduate students and speech-language pathologists, and so in 2020, a nonprofit organization, Spero Stuttering, Inc., was born! Our vision is to help, empower, and advocate for the stuttering community and their families by equipping those who work with people who stutter. Our heart is to change the reality that many SLPs are ill-equipped and unprepared to work with stuttering.
We seek to encourage and recruit practicing SLPs to obtain more training in the area of fluency disorders by providing guidance, stipends, and recognition for SLP training and hands-on traineeship experiences that promote a philosophy of treatment that seeks to see people who stutter and their families find connection and resources, discover their authentic voices and self-acceptance, and communicate effectively in their everyday lives.
We developed the Ally of StutteringTM Seal to recognize SLPs who are committed to prioritize stuttering as an area of professional growth and who are involved in the stuttering community. The seal is an accessible training path for the generalist SLP to learn more about stuttering, people who stutter, as well as research-based and holistic therapy approaches. It demonstrates that the SLP holding the seal has a special interest in stuttering and has received intentional training beyond graduate school. The seal also indicates that the Ally of StutteringTM SLP is committed to ongoing training and professional development in the area of fluency disorders at regular intervals.
Furthermore, this allows us to connect families and individuals with SLPs with more training and experience, particularly when a specialist is not readily accessible. It is important to note that the seal does not endorse or guarantee the quality of services provided by that Ally of StutteringTM. It is still up to the individual or family seeking treatment to determine if the SLP is a good fit, but we believe there is value in families knowing if their SLP has more training in the area of fluency disorders than the average SLP, since our Certificate of Clinical Competence doesn’t indicate preparedness to work with people who stutter. Our scope of practice in the field of speech-language pathology is simply too large, yet our scope of competence is much narrower. SLPs must recognize this gap, actively seek to learn more, and do no harm in the process!
We now have a growing number of Ally of StutteringTM SLPs (in 25 different states!) who are committed to improved quality of services through more specialized training and engagement in the stuttering community! We have awarded graduate research scholarships for minority students studying fluency disorders as well as Continuing Education and Traineeship (CEAT) stipends for SLPs to obtain more training. With the help of key corporate sponsors (Stuttering Therapy Resources, The Informed SLP, SLP Nerdcast, Northern Speech Services, Change & Impact, Oficina de Fluência, WorkReady Texas, and Higginbotham), we also put on the Strides for Stuttering Virtual 5K Fun Walk/Run fundraiser where more than 70 people participated nationwide, helping us raise funds for this important work.
On a personal note, my son’s stutter eventually resolved, but stuttering left an imprint on my heart, and I have become passionate about serving people who stutter. We hope we can fuel more passion among practicing SLPs, particularly school-based SLPs, equipping them to work with people who stutter with confidence and effectiveness!
Recounts one therapist/mother's journey to foster "A World That Understands Stuttering."
When I think about a world that understands stuttering, I consider my own journey of coming to understand stuttering as a speech-language pathologist (SLP) and as a mother whose son went through a period of marked disfluencies in his own speech. As a young therapist, I did not understand the multifactorial nature of stuttering or the multifaceted impact of stuttering on a person’s life. My approach was limited to external strategies or “tools” to manage what seemed to be unpredictable communication challenges. These challenges were also largely addressed in the context of contrived therapy experiences. This written reflection is my attempt to portray the importance of SLPs growing in their own understanding. My desire is that we may help individuals who stutter find what’s already within and accessible to them to become effective communicators, with or without stuttering, in the context of meaningful life experiences.
Prisms refract light. Though my understanding of physics and the properties of light waves is meager, when I see a rainbow, I understand the refraction of light. Water droplets refract light, breaking it into its spectrum colors, and subsequently, unveiling a stunning sight.
This summer I was able to participate, for the second time, in a therapeutic summer camp for youth who stutter (Camp Shout Out). I am always amazed at how much I learn when surrounded by 50 young people who stutter as well as dozens of dedicated speech-language pathologists (SLPs) and graduate students who are passionate about serving them.
I returned home with the picture of a prism in my mind. As I sought to understand prisms, I learned that originally it was believed that white light was colorless and that prisms themselves produced color. Through Sir Isaac Newton’s revolutionary experiments, it was discovered that the colors already existed in the incoming light. In other words, the prism did not create colors; instead it separated colors that were already there.
I witnessed a lot of “refraction” during this year’s camp experience. What stood out to me the most was the emphasis on guiding children and teens, to access what was already present within them, in order that they might become the best communicators possible. Instead of being guided to “pick up speech tools” to manage their speech, they were guided to engage in tangible actions that were readily available and within reach, which yielded effective communication. I marveled as I watched SLPs and graduate students become prisms, not creating color but making present colors beautifully visible in young people.
You might be thinking to yourself, what are these present colors that can sometimes appear as colorless light? The simplest yet most powerful one is the breath – merely attending to the breath and letting the natural “phrase of exhalation” be the “phrase of talking” (Kristin Chmela, SLP and fluency specialist). Another action was tangibly acknowledging and reinforcing the evidence of assertiveness and confidence such as powerful voices, strong handshakes, sustained eye contact, tall postures, and courage to take on difficult speaking situations. The concrete acknowledgment of positive thoughts and actions is amazingly transformative.
In a nutshell, through the intentional process of observing, noticing, modeling, encouraging, guiding, and praising powerful actions, we saw young people access their limitless potential within. As I strive to grow as a therapist, I desire to be a prism, that the true colors of individuals I serve may shine brightly – and that the world may better understand stuttering!
Reflection on Camp Shout Out, a unique camp experience for youth who stutter, to "Spread the Word: Education, Cooperation, Communication."
Camp Shout Out is a unique camp where youth with fluency disorders, graduate students, and speech-language professionals come together to “learn, teach, and empower each other to become more competent communicators and therapists in a safe, fun, and natural environment.” (www.campshoutout.org)
As I reflect upon Camp Shout Out, the pervading image I see is an avalanche. A start zone, a trigger, a shift in the snowpack, a track. Fast acceleration, rapid growth, and the entraining of everything in its path. Do you see Camp Shout Out yet?
The start zone – a rustic campground on beautiful Big Blue Lake.
Trigger #1: A supportive community of people with shared experiences, shared challenges, shared tears, shared goals.
Seismic activity has begun.
Trigger #2: Five guiding principles that teach us all to be…
Attentive as we listen to each other and our own bodies;
Assertive as we dare to conquer our fears and challenge self-imposed limits;
Confident as we stand up majestically and replace mistaken thoughts with helpful thoughts that lead to powerful actions;
Effective as we commit to continued learning with specific goals as we strive to become effective communicators;
Proactive as we practice and plan and set ourselves up for success and simple happiness.
Major metamorphic changes in the snowpack continue.
Trigger #3: New found understanding, peace, self-worth, courage, strength.
Deep breath in…and there flows the snow, unable to resist the imposing force, except its track is the surface of precious lives – children, young adults, old folks – all moving through their own journey, yet now with rapid acceleration and growth because they’ve all learned a great deal. They carry with them invaluable lessons, lessons that will entrain all those who cross their paths – family members, friends, teachers, co-workers.
You see, avalanche initiation starts with small amounts of movement, small variations in the surrounding conditions. However, under all of the right conditions, that small beginning evolves into a giant force. Camp Shout Out is an avalanche – an avalanche of empowerment and transformation, not of destruction. May its forward flow continue for years to come. May it grow exponentially and entrain multitudes because this force is truly life-changing!
