Introduction
You may have recently heard or seen news clips featuring Robert F. Kennedy Jr. (the current United States Secretary of Health and Human Services) and found yourself wondering about his voice. The strained, strangled, somewhat halting quality is certainly noticeable. As a speech-language pathologist, I had a unique experience when I first heard RFK Jr. speak on the radio, and immediately thought to myself: “It sounds like he has spasmodic dysphonia.” Immediately I took to Google to see if I my ear was correct (it was).
When a public figure exhibits a distinct manner of speaking, it often brings a rare moment of public awareness to voice disorders. In RFK Jr’s case, he has publicly stated that his voice issues are due to a condition called spasmodic dysphonia (SD). I thought it might be helpful to use this post to explain what that is and what we know about managing this complex neurological condition.
Whatever RFK Jr. may stand for as a public figure is beside the point; however, what his voice represents is, in some ways, quite relevant. This is not about a single person’s health, but about a disorder that affects thousands of people. About 50,000 people in North America are estimated to be affected, according to Dysphonia International (formerly the National Spasmodic Dysphonia Association). While I have only ever encountered one client with the condition, it is important for any Speech Pathologist who does any work in voice to keep an ear out for the signs of SD, since it often misidentified. The client I worked with had experienced years of not knowing what was happening and had been seen by countless medical professionals before finally being given some clarity with a diagnosis.
Understanding Spasmodic Dysphonia
So, what exactly is Spasmodic Dysphonia? At its core, SD, also referred to as laryngeal dystonia, is a neurological disorder that is part of a larger family of disorders known as dystonia (movement disorder that causes involuntary muscle spasms and tightening). It is not a problem originating in the vocal folds themselves, but in the brain. Specifically, the part of the brain that controls movement sends abnormal signals to the muscles of the larynx (voice box). This results in involuntary movements, or spasms, in the muscles that control the vocal folds.
Think of it like this: when you decide to speak, your brain sends a signal to your vocal folds to open, close, and vibrate in a precise way. In someone with SD, that signal is disrupted by these involuntary spasms. The vocal folds are either forced together too tightly or pulled apart abruptly when they should be vibrating. It is this interruption of the smooth, coordinated process of voicing that creates the characteristic strained or breathy sound. It is this spasming that leads to the irregular “halting” quality in RFK Jr’s voice. As if suddenly his voice is being choked or strangled mid-sound.
There are two primary types of Spasmodic Dysphonia. The most common form, which seems to align with the voice characteristics heard in RFK Jr., is Adductor Spasmodic Dysphonia. In this type, the muscles that bring the vocal folds together experience sudden, involuntary spasms. This causes the vocal folds to slam shut tightly when a person is trying to phonate (produce sound). The result is a voice that sounds strained, strangled, effortful, and full of breaks. Words that start with vowels can be particularly difficult, as the vocal folds must coordinate to transition from an open to a closed position. A person might be able to whisper or laugh without any strain or use their falsetto, but the moment they try to use their conversational voice, the spasms begin.
The other main type is Abductor Spasmodic Dysphonia. This is less common. Here, the spasms affect the muscles that open the vocal folds apart. During speech, particularly on sounds that require the vocal folds to be closed for voicing (like saying the letter “z”), a spasm can force the vocal folds open. This allows a sudden rush of air to escape, creating a breathy weak sound that can cut words off. Some individuals may also have a mixed form, which presents with a combination of both strained and breathy voice breaks.
It is also important to note what Spasmodic Dysphonia is not. It is not a psychological disorder. It is not caused by stress or anxiety, though these factors can certainly make the symptoms feel worse for the individual. It is a neurological issue, (a dystonia affecting the larynx). This distinction is vital because it guides the course of treatment away from things like psychotherapy and toward neurological and specialized voice management.
Diagnosis
As I noted earlier, the journey to a diagnosis can be long and frustrating. Many people are initially misdiagnosed. A general practitioner might suspect acid reflux or allergies or stress. Another specialist might think it is muscle tension dysphonia or voice misuse/overuse.
While an SLP can play a vital role in helping a client understand their condition, the true path to a definitive diagnosis for SD typically leads to an otolaryngologist, an ear, nose, and throat doctor (ENT), and specifically one who specializes in voice. This ENT would use a procedure called laryngeal videostroboscopy. This involves passing a camera on a flexible scope through the nose and down into the throat to view the vocal folds directly. A strobe light allows the doctor to see the vocal folds vibrating in slow motion. During this examination, a person with Adductor SD will be seen to have sudden, involuntary tight closures of the vocal folds that are not present during other tasks like breathing or whispering.
Treatment Options
As of now, there is no cure for Spasmodic Dysphonia. The goal of treatment is to control the symptoms and improve vocal quality and communication effectiveness. The most common and effective treatment is the injection of a very small dose of botulinum toxin (Botox) directly into the affected laryngeal muscles.
You might be familiar with Botox from its cosmetic uses, but its application here is purely functional. For Adductor SD, the Botox is injected into the overactive muscles that are slamming the vocal folds shut. The toxin works by partially blocking the nerve signals that cause the spasms. This does not paralyze the muscle, but it weakens it just enough to reduce the violent, involuntary closures, allowing for smoother voicing. The effect is not permanent. It typically lasts for three to four months, after which the spasms gradually return, and another injection is needed. I once heard an SLP explain to a client that they should think of coming in for Botox like coming in to see the dentist (just another appointment you have two to three times a year).
This treatment is considered a lifelong management of symptoms. While it is highly effective for many, it is not a perfect fix. There can be side effects, most commonly a period of a very breathy voice and mild swallowing difficulties for a week or two after the injection as the toxin takes full effect. Finding the precise right dose for each individual is a difficult task for a skilled ENT.
What a Speech-Language Pathologist Can Add
As an SLP, I might work with clients who have SD in a few ways. First, I can help in the diagnostic process by identifying the specific vocal characteristics and patterns. If someone came to me and I heard what might be SD (especially adductor type) I’d give them a speech task that would involve contrasting speech that involves lots of instances of bringing the vocal folds together (voiced sounds) with lots of instances of bringing them apart (voiceless sounds). An easy way is to get someone to count from 60-79 (voiceless) and then 80-99 (voiced). A client with adductor-type SD will find the second task more difficult, a client with abductor would have the opposite experience.
Once diagnosed by an ENT, an SLP does not try to “strengthen” the voice or “push through” the spasms. This can often make things worse by increasing muscle tension. Instead, therapy focuses on complementary strategies. We might work on optimizing breath support to provide a steadier airflow. We can explore techniques to find an easier/gentler onset of voicing, reducing the hard glottal attacks that can trigger spasms. We also spend a significant amount of time working on communication strategies. This includes training in clear articulation so that even if the voice is strained, the words are more intelligible. We also discuss pacing, using strategic pauses, and employing nonverbal communication to reduce the overall burden on the voice.
The Human Impact of Spasmodic Dysphonia
Living with Spasmodic Dysphonia extends far beyond the mechanics of speech. The emotional and social impact can be profound. Imagine needing to make a phone call to schedule a doctor’s appointment and having your voice break so severely that the receptionist can’t understand you, or the anxiety of having to speak in a meeting or at a social gathering. SD often develops in and around middle age, and a person’s voice is so intrinsically linked to who they are that a sudden change in how they sound can be very distressing. Individuals with SD often face misunderstandings from strangers, and sometimes even from friends and family, who may not grasp that this is a physical, neurological condition and not a sign of emotional stress.
This is why raising awareness is so important. When a public figure like RFK Jr. speaks openly about his Spasmodic Dysphonia, it shines a light on a disorder that many have never heard of. It helps to normalize it and encourages others who may be struggling with unexplained voice changes to seek out a specialist.
If you, or someone you know, has been experiencing a sudden and persistent change in voice quality that involves unexpected strains, breaks, or breathiness, it is worth taking seriously. The first step is to see your family physician and ask for a referral to an otolaryngologist who specializes in voice (that last bit is crucial). Dysphonia International (until recently known as The National Spasmodic Dysphonia Association) is also an incredible source for information and support.
With proper management, individuals can regain their confidence and their ability to communicate effectively.
