Project Description

Childhood-Onset Fluency Disorder Fast Facts

Childhood-onset fluency disorder (COFD) is a communication disorder in which a person has trouble with the flow and timing of their speech.

COFD is more commonly referred to as stuttering.

Most cases of COFD begin by the age of six.

The symptoms of COFD often improve with time, and most people outgrow the disorder by adulthood.

United Brain Association

COFD is more commonly referred to as stuttering.

What is Childhood-Onset Fluency Disorder?

Childhood-onset fluency disorder (COFD) is a disorder of speech that interferes with the timing and flow of a person’s spoken communication. COFD is more commonly referred to as stuttering.

COFD symptoms typically begin in early childhood, with most cases starting by age six. The symptoms usually improve as the child gets older, and most people outgrow the disorder entirely by adulthood.

Symptoms of COFD

The symptoms of COFD may be worse when the person is under stress or in a situation that causes anxiety. However, many people don’t experience symptoms when talking to themselves, singing, or reading aloud.

Symptoms may include:

  • Problems starting to speak
  • Prolonging sounds within a word or phrase
  • Repetition of sounds within a word or phrase
  • Pauses in the middle of words
  • Excess use of filler words (e.g., “umm”)
  • Physical tension in the face or body while speaking
  • Anxiety surrounding situations in which the person is required to talk

Some people experience physical symptoms in addition to speech difficulties. These symptoms may include:

  • Facial tics
  • Jerking movements of the head
  • Excessive blinking
  • Clenching fists

What Causes Childhood-Onset Fluency Disorder?

Scientists don’t yet fully understand what causes COFD. However, an individual’s risk for developing COFD or other anxiety disorders is probably due to a complex interaction of genetic, neurological, and environmental factors.

Risk factors for COFD include:

  • Family history of COFD or other communication disorders
  • History of developmental delays or other speech problems
  • Having a stressful home environment
  • Neurological problems with speech-related motor control

Is Childhood-Onset Fluency Disorder Hereditary?

People with a family history of communication disorders have a higher risk of developing COFD, suggesting an inherited component to the disorder. However, scientists have not identified a single gene definitively associated with COFD or other communication disorders.

How Is Childhood-Onset Fluency Disorder Detected?

COFD typically begins early in childhood, just as a child is learning how to speak. A certain degree of non-fluency is expected during this early development, making it challenging to spot the earliest signs of the disorder.

Some potential warning signs of COFD include:

  • Repeating parts of words
  • Holding sounds for too long
  • Being tense or breathless while speaking
  • Using lots of filler words
  • Seeming to be unable to talk (e.g., opening their mouth without sounds coming out)

How Is Childhood-Onset Fluency Disorder Diagnosed?

Diagnosis of COFD begins with determining that the patient has a cluster of symptoms that meet the diagnostic criteria for the disorder. Then, a doctor will start with a physical exam to rule out other problems that may be causing the symptoms, such as a brain injury or Tourette syndrome. After these exams, if the doctor suspects that COFD is the cause of the symptoms, they may recommend a psychological or psychiatric assessment to solidify the diagnosis.

Diagnostic steps may include:

  • A physical exam. This exam aims to rule out physical conditions that could be causing the symptoms.
  • Assessment by a speech-language pathologist. This assessment will attempt to understand the person’s ability to speak and understand language.
  • Psychological assessments. These assessments may take the form of questionnaires or talk sessions with a mental health professional to assess the patient’s mood, mental state, and mental health history. Family members or caregivers may also be asked to participate in these assessments.

The results of the psychological assessments will be compared to the diagnostic criteria for COFD in the Diagnostic and Statistical Manual of Mental Disorders (DSM). The DSM criteria for COFD include:

  • The child has problems with the flow and/or timing of speech that are not age-appropriate.
  • The symptoms cause impairment in school, social, or work situations.
  • The symptoms begin in early childhood.
  • The symptoms are not better explained by a neurological problem, a medical disorder, a sensory problem, or another mental health-related issue.

PLEASE CONSULT A PHYSICIAN FOR MORE INFORMATION.

How Is Childhood-Onset Fluency Disorder Treated?

Speech therapy and psychotherapy are often the most effective approaches to controlling COFD. The most commonly used psychotherapy approach is cognitive-behavioral therapy (CBT). This process focuses on helping the patient identify a pattern of problematic thoughts associated with stuttering and construct strategies and solutions for dealing with them.

Other treatment approaches may include:

  • Parent-child therapy
  • Electronic assistive devices

How Does Childhood-Onset Fluency Disorder Progress?

The majority of people with COFD will see improvement in their symptoms by adulthood. However, the effects of the disorder in childhood can cause serious mental health and social issues. Potential complications of COFD include:

  • Low self-esteem
  • Being bullied
  • Problems with schoolwork
  • Impairment of social relationships
  • Anxiety

How Is Childhood-Onset Fluency Disorder Prevented?

There is no known way to prevent COFD. However, recognizing the disorder early and intervening with treatment may lessen the severity of symptoms and help them resolve more quickly.

Childhood-Onset Fluency Disorder Caregiver Tips

COFD often exists alongside other mental health and brain-related conditions, a condition called co-morbidity. Here are a few of the disorders commonly associated with COFD:

Childhood-Onset Fluency Disorder Brain Science

Scientists have discovered differences in brain activity between people with fluency disorders such as COFD and those who don’t stutter. In particular, studies have found that an area in the right front part of the brain is more active than usual in people who stutter, and the corresponding area on the left side is less active.

A recent study in Germany noted that one of the hyperactive parts of the brain, the right inferior frontal gyrus, plays a role in stopping actions such as speech or movement. Two areas that show lower than normal activity, the left inferior frontal gyrus, and the left motor cortex, are responsible for planning and controlling speech movements.

The study’s authors theorized that the hyperactive right inferior frontal gyrus might suppress the action of the speech-movement centers on the left side of the brain. The result could be the characteristic halts, pauses, and other symptoms of COFD.

Childhood-Onset Fluency Disorder Research

Title: Effects of Ecopipam or Placebo in Adults With Stuttering (Speak Freely)

Stage: Active

Study Director: Atul R. Mahableshwarkar, MD, DFAPA

Emalex Biosciences Inc.  

This is a multicenter, randomized, double-blind, placebo-controlled, parallel-group, Phase 2 exploratory study in adult subjects with childhood-onset fluency disorder.

At the Baseline visit, eligible subjects will be randomized 1:1 to receive either a target steady-state dose of ecopipam HCl ~2 mg/kg/day or a matching placebo for a 12-week treatment period of a 4-week Titration Phase followed by an 8-week Maintenance Phase.

Subjects will return to the clinic at 4, 8, and 12 weeks after Randomization and Follow-up visits 7 and 14 days after completing the Treatment Period or Early Discontinuation. Efficacy assessments will be conducted at Weeks 4, 8, and 12, and safety assessments will be conducted at all visits. Subjects will have adverse events and other safety parameters assessed by phone or video conference at Weeks 2, 6, and 10, and 30 days after the last study drug administration. Signs or symptoms of withdrawal, abuse, and dependence will be monitored throughout the study.

At the end of the Treatment Period or Early Discontinuation, subjects will taper the study drug by 25 mg/day until they are off the study drug for up to 1 week.

 

Title: Effects of Emotional Processes on Speech Motor Control in Early Childhood Stuttering

Stage: Recruiting

Principal investigator: Victoria Tumanova, PhD

Syracuse University

Syracuse, NY 

This study will compare speech variability between preschool-age children who stutter and typically fluent, age-matched peers. Differences in emotional reactivity, regulation, and speech motor control have been implicated in stuttering development in children. This study seeks to understand further how these processes interact. Children will repeat a simple phrase after viewing age-appropriate images of either negative or neutral valence to assess speech motor control.

Stuttering is a developmental disorder that emerges in the preschool years as children are undergoing rapid development of their speech, language, and emotional regulation processes. This study aims to understand how speech motor control and emotional processes interact in young children who do, and do not stutter.

In Aim 1, the investigators will be observing how speech motor control and learning are affected by emotional (physiological) arousal. High arousal (e.g., stress) has been shown to disrupt highly skilled performances such as sports and music performance (Yoshie et al., 2009). Parents of children who stutter often report that exciting or stressful situations lead to increased stuttering in their children. However, there is little research on how excitement or stress affects fluency in children.

In Aim 2, the investigators will observe how behavioral inhibition plays a role in speech motor control and motor learning in the context of emotional processes. Behavioral inhibition is one aspect of a child’s temperament. Temperament refers to self-regulation and emotional, motor, and attentional reactivity that differs among individuals. Children with high behavioral inhibition (BI) are hyper-vigilant and more sensitive to new stimuli and negative emotional states. Therefore, the purpose of Aim 2 is to see if children with high BI are more susceptible to contextual emotional processes, thus affecting speech motor control and learning.

Outcomes will be measured by calculating the variability in speech motor movements (STI). The two groups, children who stutter and age-matched peers who do not stutter, will be compared to see how speech motor control varies between groups and conditions.

 

Title: Speech Processing in Stuttering

Stage: Recruiting

Principal investigator: Emily Garnett, PhD

University of Michigan

Ann Arbor, MI

This research is being conducted to understand stuttering better, specifically how people who stutter may process and/or produce speech. Eligible participants enrolled will complete various computer and speech-based tasks on up to two visits.

The study team will update the record to include the secondary identification number once the NIH has released the funds.

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