Preface
If you’ve spent any time in the stuttering community, as a parent, as a speech-language pathologist, or as someone who stutters, you’ve probably encountered some big, confident claims about what therapy can do for young children who stutter. These claims may lead us to believe that lifelong stuttering can be ‘prevented’ or ‘eliminated’ with a specific prescribed method. Definitive statements carry enormous weight, especially when they reach the ears of a worried parent.
At the same time, a growing body of research points to the powerful role that genetics, neurophysiology, and heritability play in stuttering. We know that stuttering runs in families. We know that brain imaging studies have revealed structural and functional differences in people who stutter. We know that for some children, stuttering persists regardless of the quality or quantity of intervention they receive.
So how do we reconcile these realities? Neuroplasticity, the brain’s ability to form new neural pathways and strengthen existing ones in response to learning and experience, is real and well-documented. But can we honestly tell parents that if they just practice the right things early enough, their child’s brain will “choose fluency”?
I’ve wrestled with this tension for a long time. I believe deeply in the value of early intervention. I believe that we can and should support families in reaching the changes that are meaningful to them. And I know that stuttering does resolve naturally for many children. But I cannot, in good conscience, stand behind black-and-white statements that frame stuttering as something that can simply be practiced away.
That’s why I’m so grateful to have Dr. Bernstein Ratner join me for this conversation. She brings both rigorous research expertise and a thoughtful perspective on what the science tells us, and what it doesn’t. My hope is that this dialogue will offer clinicians and families an honest, more nuanced way to think about what’s possible when a young child stutters.
The Conversation
Question 1
When we talk about the genetics and heritability of stuttering, what do we actually know at this point, and what are we still figuring out? For parents and clinicians who may not follow the research closely, how would you describe what the science tells us about why some children begin to stutter?
We’ve always known that some stuttering runs in families, and some specific genes have been identified in very large families that appear to link to stuttering. So, there’s a genetic “contribution” to some stuttering. But we’re a long way from identifying a single gene (there are likely to be more than one), in animal or human studies. And the genes identified thus far are widely distributed and contribute to basic cellular function found all over the body. So a genetic engineering “cure” for stuttering is way off in the future and may be unlikely.
However, as in other things we inherit from our relatives, nothing is clear cut about how a given individual inherited stuttering, or its persistence. We don’t have genetic testing for stuttering; I personally think that such testing will be many years in the future. Some children have no obvious genetic history, and I have personally seen some children with significant persistent stuttering in the family tree (parents, grandparents, etc.) who stuttered very briefly and stopped.
The fact that we can’t currently track the genetics of stuttering could be one reason why some people have dedicated great attention to the “environment” of young children who stutter. Even identical twins can be discordant for stuttering (one does, one doesn’t). Early researchers were positive that meant that the environment (parenting, experiences, etc.) were a possible key to stuttering onset and persistence. But, frankly, they didn’t know much about genetics. Even strongly genetic conditions can vary between twins because your “environment” starts before you are born, and possibly even before embryos implant. Even small differences in early embryonic development, or conditions in the womb or during childbirth, can result in differences between supposedly identical individuals, in addition to the more obvious things that happen during our lifetime.
Question 2
Neuroplasticity is often cited in clinical discussions about stuttering therapy for young children. In your view, how well does the science of neuroplasticity apply to stuttering, especially when we’re talking about a condition with known genetic and neurological factors?
We know that neuroplasticity in children is very powerful, so much so that children can make remarkable recoveries from significant childhood brain injuries. We also know that some aspects of the environment (e.g., stimulation, enriched language input, nurturing care, and many others too numerous to list here) are associated with growth in brain networks over early childhood. We also have impressive research findings from people such as Dr. Soo-Eun Chang (Michigan) and Ho Ming Chow (Delaware), among others, to show that brain networks look different in three groups of children: children who have never stuttered, children who stuttered but “outgrew it”, and children who continued to stutter. Children whose stuttering stopped have brain network patterns sort of in the middle, and their brain growth began to resemble that of nonstuttering children over childhood.
But there’s an important missing link here. We don’t know what controls that brain growth. We haven’t been able to link brain growth to anything in children’s environments, experiences or treatment histories. We can see some general trends, but we are very far from some formula for growing “better brains” (despite some ads you see for supplements). So, the fact that children’s brains change and adapt, in some cases to more closely resemble those of children who don’t stutter, doesn’t mean that we have any control over that at all.
Question 3
Some clinicians frame their approach around the idea that a child’s brain is either “practicing fluency” or “practicing stuttering,” and that our job is to tip the balance toward fluency. What are your thoughts on that framework? Does the research support the idea that stuttering is something the brain is “practicing” in the way that framing implies?
While I do believe that some exercises or parental instructions may have children “practicing fluency”, I think we need to remember that even expert athletes don’t hit their goals/targets 100% of the time; they are just practicing to be more fluent and automatic in their motor routines. If great athletes never missed their mark, we’d have very different experiences playing or watching sports.
I am not sure that continued stuttering is “practicing stuttering,” although they may be practicing maladaptive responses to it (i.e., behaviors that often provide temporary relief but may create long-term problems). We need to ask what the child is doing when stuttering and help shape that into something more natural and free flowing. Imagine if a child is learning to ski and fears falling down – how well will their skills develop? In this scenario, we need to help the child to do what they want to do – move forward (in speech, down the hill) and minimize any maladaptive approaches to the desired goal. I am more concerned about the learned, maladaptive approaches to talking (e.g., struggle, avoidance, learned physical responses, fear of talking or stuttering) than the original issue that trips up speech periodically.
Would parents want to have their child’s coach blame the kid for not practicing hard enough each time they didn’t score or block a kick? Yet we seem to presume that a child who continues to stutter hasn’t tried, or practiced hard enough, or that parents haven’t been diligent enough in doing “their part” in implementing a therapy.
As an author of “A Handbook on Stuttering,” we recently surveyed all available clinical trials in stuttering, which have enrolled fairly small numbers of children. None achieved outcomes meaningfully different from “natural” or “unassisted” recovery numbers, based on much larger populations of children who stutter. To extrapolate from results of therapy trials to strong confidence that one’s program can “cure” or “prevent” persistent stuttering is taking the available evidence way too far too fast, I believe. Similarly, I do not believe that children whose stuttering persists (or their parents) simply haven’t tried hard enough to implement available therapies.
Lots of kids grow past stuttering into what seems like spontaneous, typical fluency. But many kids don’t. As a parent, I’d ask – what do I want for my child if they do continue to stutter? I’d want to build self-efficacy, confidence, and yes, skills in speaking. But I’d want those first skills to be about how to get your words out more easily and continue to say what you want to say. And resist any bullying and teasing in a confident and productive way. If therapy can then improve on speaking skills to either reduce stutters or make them easier to move through, then that would also be good. To bring the analogy back to sports, I wouldn’t want to start off my kid’s sports career by focusing on missed shots. And I wouldn’t want to teach them to respond to asthma attacks by feeling guilty or helpless when they wheeze. I think we need to start with what we want if stuttering persists, rather than investing in too strong a sense of trust that we really know how to cure or prevent persistent stuttering.
Question 4
We agree that early intervention can be valuable. What would you want a parent to hear from a clinician regarding therapy after their child begins stuttering?
I do believe that good therapy can prevent many of the adverse impacts of stuttering: not being able to say what you want to say, how to get “unstuck”, how to respond to unkind comments or behaviors. This is how we address most childhood conditions that often go away, inexplicably, across the early years, but do leave some children with chronic challenges. We don’t cure or prevent asthma, eczema, seizures, tics, language delay, dyslexia, etc., but we are very good at minimizing their adverse impacts.
In most human conditions, a good outcome is not necessarily a cure: it’s reduction of adverse impact. This is not defeatist – if we can’t eliminate the condition, we sure as heck can work to minimize its impacts. And if the problem “goes away”, that is great. But it’s not our first measure of success in so many aspects of life.
If our definition of a good therapy is “cure”, and if our work really plays very little predictable, realistic role in that outcome, there is great potential harm. SLPs may think they don’t have the right tools (and parents might agree). If parents are the supposed agents of the cure, and it doesn’t happen, they are right to be frustrated, guilty, mad or all three. And if children are taught to do something that doesn’t reliably make a “problem” go away, then they feel anxious, guilty and frustrated as well.
For older children and adults, how easy will it be to change a focus to acceptance from prior messages that convey to children (and their parents) stuttering needs to go away? As Holte says in her very eye-opening book of interviews with parents and children who stutter, available therapies for older children and adults seem like “second best” sops for failed early therapies. Personally, I just think that’s really sad. Both my kids have life-long conditions. One has what we now call DLD (Developmental Language Disorder), and one has an orthopedic problem. If someone had said to any of us that what I did or they did could either cure them or make the condition stick around (and the data at the time certainly didn’t suggest that), I have no idea what all of us would be thinking right now. Today, they are both healthy, happy, functional adults, who see very little everyday impact from their conditions, and know what to do if challenges arise. I’d want that model for all the families that I work with or who come for SLP support.
Question 5
For clinicians who want to be both hopeful and honest with the families they serve, what would you suggest as a more responsible way to talk about outcomes? Is there language or framing that you think better reflects what the research supports?
With enormous thanks to my colleague Shelley Brundage, I’d start with reframing what we call the “anchor” in counseling families about expected outcomes in early stuttering. I always started with the “good news” that most children appear to naturally pass through early stuttering and achieve what appears to be typical fluency. But that may be the wrong starting space. If we start by saying, a lot of kids “outgrow” stuttering, but about 20% of kids do NOT (which is true), and we don’t know which kids those will be (also true), then what is it you’d most want for your child going forward? (Feel free to insert asthma, eczema, tics, seizures, and any number of other childhood conditions here, if it helps). I think most parents would say that they want the child to experience fewer impacts and obstacles – fewer adverse symptoms (this is where SLPs can really help to guide the child to more adaptive responses to get their words out with less struggle and frustration), and fewer impacts (resilience, self-advocacy, etc.). I wouldn’t imply that there’s nothing that parents can do to help their child – parents can impact all this in really positive ways. But if all they really want is for the child to “stop doing that” (now again imagine the other conditions), I believe that both children and families will simply get more and more frustrated.
If I ask parents what they fear, they usually say it’s that their child will continue to stutter. But that’s not really what they are afraid of. They fear the impacts of the stuttering: that the child will have trouble communicating, making friends, standing up to bullies, etc. We know we can help with that. But let’s start with today and tomorrow. That’s what they do in most other conditions of childhood. In this sense, viewing stuttering as somehow different may do us a real disservice, and additionally is not strongly evidence-based.
Closing Notes
Dr. Bernstein Ratner, thank you for taking the time to share your expertise and perspective with our readers. This conversation reflects something I believe our field needs more of: honest, nuanced dialogue that respects both the science and the lived experiences of families navigating stuttering. Ultimately, as a speech therapist, my goal in early childhood stuttering is to establish a win-win situation for families whether stuttering resolves or persists, while ensuring families are equipped for either outcome.
A note for readers: This interview is meant to open a conversation, not close one. If you’re a parent, I hope it offers you a fuller picture of what we know and what remains uncertain. Take advantage of Spero’s complimentary helpline, Caregiver Bridge, if you’d like to speak with someone further. If you’re a clinician, I hope it invites reflection on the language we use and the claims we make. Change is possible. Support matters. And honesty, even when it’s complicated, is something every family deserves.
