Chatting with Haley and Poppy
Editor’s Note: Chatting with Haley and Poppy is a platform to advocate for children who are nonverbal. The recipients of this mail are either current correspondents or professionals in the field. By all means suggest articles or make comments by email or phone listed below.
A PATH TO TRANSLATE THE LANGUAGE OF NONVERBAL CHILDREN
In 1985 Michael Brown and Joseph Goldstein were awarded the Nobel Prize in Medicine for their discoveries concerning the regulation of cholesterol metabolism. Their work set the foundation for drugs we now know as statins. It was In the 1970s, when they began studying a rare metabolic disorder, familial hypercholesterolemia. The history of medicine is replete with examples of rare conditions research having universal application. The systemic problems of children with rare diseases affecting both motor and intellectual pathways are no different.
Too often their disabilities prevent them from being interrogated and they are considered as profoundly learning disabled, as if they have nothing to say. For reasons that appear more discriminatory rather than scientific they are customarily excluded from conventional research (Russell et al). However, there is research indicating people with profound disabilities have preserved cognition and vocabulary, (Corderre et al). There is also evidence that autism spectrum disorders may be similar to locked-in syndrome (Pines et al). Thus, they are only one of many categories of people deprived of speech due to developmental factors, accident, illness, mental health or aging.
These children offer unique opportunities for cognitive neuroscience to delve deeply into the intricacies of the relationship between the motor and cognitive domains. (Veldman et al)
Research projects focused on their nonverbal communication patterns will have universal impact and will open this door. Research projects that can translate wants and needs into intentional autonomous actions will prove especially valuable giving agency to children with severe disabilities.
Unlocking the nonverbal communication patterns will also prove especially valuable to medical professionals and caregivers who seek information necessary for effective treatments, therapeutic interventions or discourse.
In the normal course of communication, we rely not only on words but gestures, body movement, posture, tone of the utterance, physiological condition, social setting, environmental conditions, and social status to determine intent and meaning. These various modalities of nonverbal communication are performed by all of us as a suite and their use is idiosyncratic and influenced by cultural factors (Bellieni 2022).
There is evidence that “assessment of functional (nonverbal) communication is increasingly used in large-scale randomized controlled trials as the primary outcome measure” However, “there is little knowledge about how commonly used measures of functional communication relate to each other”, (Schumacher et al).
As is customary in science, research is specialized: one chooses facial expression, another vocalization, another body movement and so on. One such example is the work of the MIT Media Lab where nonverbal vocalizations are seen as speech. (Narain, Johnson) A supplemental work focused on vocalizations demonstrates “the need and potential for specialized, naturalistic databases and novel computational methods to enhance translational communication technologies in underserved populations”. (Narain, Johnson)
However, integration of all nonverbal modalities is necessary to provide the answers caregivers and clinicians seek.
In our next post we will introduce technologies that provide a platform for such integration.
Contact: Ed Fennell firstname.lastname@example.org
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