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 efennell43@gmail.com
838 218 4337
Please call or email with your comments or suggestions for feature articles

Chatting with Haley and Poppy is a platform to promote research on the preserved cognition of nonverbal children. Unable to be interrogated, there is a presumption that these children have nothing to say. In fact, there is research indicating people with profound disabilities have receptive vocabulary yet are unable to say those words. (Corderre et al).

These children are not atypical. There is evidence children with autism spectrum disorders are locked-in (Pines et al). They are only one of many categories of people deprived of speech due to developmental factors, accident, illness, mental health or aging. 

Yet, all pose a significant problem for medical professionals and caregivers who seek information necessary for effective treatments, therapeutic interventions or social discourse.  Hence, research exploring nonverbal communication is crucial to medicine and all patients deprived of speech. 

In the normal course of communication, we rely not only on words but gestures, body movement, posture, tone of the utterance, physiological condition, social environment, environmental conditions, and social status to determine intent and meaning. In dealing with those with language impairments whether temporary or permanent, it is necessary to consider the full range of functional communication (Bellieni 2022). 

There is evidence that “assessment of functional 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). And there is even less knowledge of potential application to nonverbal children with neurodevelopmental disorders.

As is customary in science, research is specialized. Labs may specialize: this one choosing facial expression, another vocalization, another body movement and so on. Integration is necessary to provide the answers caregivers and clinicians seek. These various modalities of functional nonverbal communication are performed as a suite and their use is idiosyncratic. They are driven, not only by genetic inheritance, but culture, environment and social conditions. The permutations and interpretations are in.

Nevertheless, it is important to acknowledge that at some time in our life we were or will be deprived of language. 

 

  

 

Chatting with Haley and Poppy 

 Editor’s Note: Chatting with Haley and Poppy is a platform to advocate for children who are nonverbal. In ensuing posts, we will suggest published articles with the potential to reveal the preserved cognitive abilities of these children.

For those parents, caregivers, teachers, aides, researchers and clinicians who believe in the preserved cognition of children who are nonverbal, listen up. There is foundation for your beliefs. Your skill is based on science, it is the science of kinesics. Credit for that science is given to anthropologist Ray L. Birdwhistell. 

“Man is a multi-sensorial being. Occasionally he verbalizes … and we must seriously examine the implications of the fact that man does not communicate by word alone.”

Ray Birdwhistell 

For 16 years Haley and I have communicated utilizing kinesics. Although she is nonverbal her understanding is reflected in her gestures, body movements, eye gaze, vocalizations, facial expressions, physiological condition, and her environmental and social circumstances. Through her non-verbal behavior she demonstrates her cognition.

In a previous email we featured the Insension Project which used identical technology to build a design and develop an ICT platform that enables persons with profound and multiple learning disabilities (PIMD) to communicate their intentions. 

Non-Verbal Communication by Autistic Children

Conclusion: “Children with disabilities, especially autistic children should not be shunned or discriminated against because of their limitations. However, they must be given more opportunities to communicate and interact even through non-verbal communication. Hopefully this research can change people’s views about autistic children who are often seen as unable to do anything and experience obstacles in communication. They can be more sensitive or even more aware of the presence of those children, because basically all human beings are created both normal humans and those who have limitations also have the same rights.”

Contact:  Ed Fennell efennell43@gmail.com

838 218 4337 Please call or email with your comments or suggestions for feature articles.

 

Chatting with Haley and Poppy

Editor’s Note: Chatting with Haley and Poppy is a platform to advocate for children who are non verbal and diagnosed with developmental and epileptic encephalopathy. In ensuing posts we will suggest published articles in neuroimaging journals with the potential to reveal the preserved cognitive abilities of these children. 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.

Dear Colleague,

I am leading an initiative for the International Foundation of CDKL5 Research that focuses on an underserved population. This population is comprised of children without motor or speech responses required by standardized assessments. Lacking the means of expression and no valid tools to measure their intelligence, the conclusion is too often drawn that there is no intelligence. Consequently there is no reseach on the preserved cognitive function of these children.

The aversion to research in this population is clearly evident in autism research. “Ninety-four (94%) of all participants identified as being on the autism spectrum in the studies reviewed did not have Intellectual Disability. Eight out of ten studies demonstrated selection bias against participants with ID”. (Russel, Mnady et al).

To initiate research to study the preserved cognitive functions and establish biomarkers for such I have put together a network, consisting of the International Foundation of CDKL5 Research and the National Center of Adaptive Neurotechnologies, (NCAN), BCI4KIDS in Calgary and Augmentative and Alternative Communication Translation (AACT) Lab at University of Nebraska. All have expressed an interest in studying this population and their preserved cognitive function.

I am fortunate to have the support of the National Center of Adaptive Neurotechnologies, (NCAN), leaders in BCI technology and Tim Benke, a clinician and researcher who is a leader and specialist in children with developmental and epileptic encephalopathy.

Finally, I share that I am quite fortunate to be the primary caregiver to a delightful girl of 16 years whom I have the privilege of homeschooling. She has a diagnosis of CDKL5. As my colleagues remind me I have my own lab with an n of (1).

Ed Fennell 838 218 4337

Chatting with Haley and Poppy is proud to introduce the Incension Project. It represents a landmark step for CHILDREN who cannot speak for themselves. It was funded by the European Union from 2019 to 2021. It had success and proof of concept yet funding was discontinued. We introduced ourselves to the project director who would like to continue this work. It was carried out surprisingly by large supercomputing firm who had the foresight to see how information and communication technology (ICT) could benefit those with profound learning and mental disorders (PLMD). 

The International community is a few steps ahead. Hopefully we can help to fill this gap.

TAKE TIME TO VISIT THEIR SITE AND BY ALL MEANS WATCH THE VIDEO. (TAP BELOW)

https://www.insension.eu/