Kimberly Kitzerow’s daughter was born nonverbal, and through her journey she has seen firsthand the unique challenges faced by people who cannot speak.

When someone cannot see, we investigate the visual system. When someone cannot hear, we investigate the auditory system. We test the underlying mechanisms to identify the dysfunction, determine prognosis, explore treatment options, and provide accommodations when needed.

But when a child cannot speak, no standardized diagnostic/prognostic protocol exists to systematically investigate the functional systems required for speech production.

Research has already demonstrated facial muscle differences in nonverbal individuals, yet the nerves and motor pathways responsible for controlling speech production are still not routinely assessed for function. Essential speech systems including the vagus nerve and its branches involved in vocalization, the hypoglossal nerve responsible for tongue movement, and higher motor pathways that transmit speech signals from the brain have never been systematically evaluated in many nonverbal individuals despite complete inability to produce speech.

If these systems malfunction, the result may not be slurred or distorted speech, but complete inability to speak.

Nonverality should follow the same clinical pathway used for other functional deficits:

Diagnosis:
Identify which mechanism or pathway is malfunctioning and contributing to nonverbal speech outcomes.

Prognosis:
Determine whether the dysfunction may improve, require accommodation, or remain persistent.

Treatment:
Develop targeted interventions aimed at restoring or improving speech function where possible.

Accommodation:
Provide early and effective communication supports when speech cannot be restored.

Several existing technologies could already begin investigating these mechanisms, including:
• Facial electrodiagnostic testing to evaluate whether speech-related nerves and muscles are functioning properly
• High-resolution MRI imaging to visualize facial and speech-related nerve abnormalities
• Motor pathway evaluation to investigate how speech signals are transmitted from the brain to speech musculature

Without mechanistic investigation, families are often given behavioral explanations and community behavior-management resources without further functional testing into why speech is inaccessible in the first place.

Healthcare providers, researchers, and policymakers must make the development of standardized speech-access diagnostic and prognostic protocols a priority.

Nonverbal individuals deserve the same level of functional investigation, diagnostic clarity, prognostic guidance, treatment exploration, and accommodation planning afforded to those with vision and hearing impairments.

Learn more:
Kimberlyedu.org

Sign the petition:
Change.org Petition