They Speak The Language of Love
Reflecting on the ultimate social butterflies
by Jo Kaur, Founder, Riaan Research Initiative
“When he looked into her dark eyes, and saw that her lips were poised between a laugh and silence, he learned the most important part of the language that all the world spoke -- the language that everyone on earth was capable of understanding in their heart. It was love. Something older than humanity, more ancient than the desert. Something that exerted the same force whenever two pairs of eyes met, as had theirs here at the well.” - An Excerpt from The Alchemist by Paulo Coelho
(August 8, 2024) - It’s hard not to melt into Riaan’s eyes. They’re warm, full of wisdom, and overflowing with love. The twinkle in his gaze envelops me in a warmth that chases the cold and darkness away. The experience of eye-to-eye contact with him is almost always surreal, and most certainly divine.
I have often marveled at his ability to connect with others, the love he has for everyone he meets. I’ve never witnessed that in any other person. Where does it come from? Why is he like that? Why does he always speak the language of love, even in words he cannot utter? How can his emotional and social skills be so advanced, so enlightened, despite all of the other neurological difficulties he faces?
Every parent or loved one of a child diagnosed with Cockayne syndrome will tell you the same thing: their child is the ultimate social butterfly. It’s one of the first things any of us says about our child. Always sweet, always social, full of joy, and utterly unforgettable. Many parents describe their child as the “mayor” of their schools, or any environment they are in. They enter a restaurant and the first thing their child does if they are verbal is smile and say hello to all. If they are nonverbal they find other ways to greet everyone they come across: a wave, a bright smile, reaching out for a hug, and always full of absolute, adoring, pure, unfiltered love. 100% organic. Probably grassfed.
Is there a scientific reason behind this phenomenon? Why are children with Cockayne syndrome so social?
In 2013, Dr. Sandra Baez, a researcher based in Colombia, examined this issue in a paper entitled, “Tracking the cognitive, social, and neuroanatomical profile in early neurodegeneration: Type III Cockayne syndrome.” In her piece, she analyzed the case of a 51 year-old patient with a mild version of Cockayne syndrome (this is the rare among the rare, patients who live until mid adulthood, even into their 40s or 50s). The patient had a mutation in gene CSA/ERCC8, and notable cognitive delays (a low average IQ of 81) but had an impressive life in terms of schooling, and other achievements. He also had generalized cerebral and cerebellar atrophy (or shrinking) of the brain, and calcifications.
Remarkably, Dr. Baez’ study revealed that the patient’s social cognitive skills were largely intact. The patient was able to identify facial expressions indicating happiness, surprise, fear, and sadness but had difficulty recognizing disgust and anger; he was also successful in inferring mental and emotional states and identifying when someone intentionally inflicts pain on another person (such as stepping on their toes on purpose). She noted that the patient’s social cognitive skills, including empathy for others, were more preserved than his other cognitive skills such as memory, language, and executive functioning skills.
Dr. Baez assessed that these results were consistent with descriptions of patients with moderate (Type 1) or severe (Type 2) Cockayne syndrome. Patients of all severity levels are routinely characterized by researchers as having “normal social skills and engaging, outgoing and friendly personalities, despite their cognitive impairments.”
But why would social cognitive skills be more preserved in children/adults with Cockayne syndrome than other cognitive skills when there is generalized brain shrinkage?
Dr. Baez hypothesized it was likely because:
1.) The Nature of Being Human: Humans are incredibly social beings, and our very survival and success depends on our interpersonal and social skills. Because such skills are common across primates, and present throughout the human lifespan, it is possible there exists a distinct and separate neural pathway independent from other cognitive functions.
2.) Being Social Helps Us Survive: Because social skills are so critical for human survival, these neural pathways could be more responsive to intrinsic and extrinsic stimuli and better able to re-organize their structure, function, and connections accordingly.
3.) Tracks with Typical Aging Processes: If we think of CS as a premature aging disease, then it is important to remember that in normal aging processes, the very elderly tend to lose their memory and executive functioning skills (problem solving, critical thinking skills, cognitive flexibility, inhibition control, i.e. daily life skills) but retain their emotional processing and social behavior. This provides a possible explanation as to why CS children who suffer from “premature aging” may not have as strong cognitive skills but still retain their social cognitive skills.
Going beyond Dr. Baez, I would hypothesize that children with Cockayne syndrome actually tend to have more evolved and advanced social cognitive skills than other children/adults.
My speculations are merely anecdotal at this point but I think it makes sense. When a person loses their vision, they say their other senses become heightened. They can hear, smell, and taste better, and work hard to compensate for the loss of their vision. Why wouldn’t it work the same way for children with Cockayne syndrome? For many of them, their strongest cognitive ability is their social skills, and it would make sense that these skills would be more cultivated and advanced throughout their breathtaking, majestic, and enlightened lives.
Our divine social butterflies. They have so much to teach us.
Interestingly enough, the physician who first identified Cockayne syndrome, Edward Cockayne, had a passion for butterflies, and donated much of his proceeds to butterfly and moth preservation. As a result, the symbol for Cockayne syndrome became the “butterfly” with many support groups adopting this beautiful creature as part of their motto or logo.
I’d like to offer another suggestion, perhaps the most obvious. The butterfly analogy works because our children are truly the ultimate social butterflies, cognitively, and beyond.
Yes, there’s a scientific explanation for why their social skills are so well preserved but there’s also a deeper magic at work. As a person of faith, I believe they are divinely inspired, and their ability to share love, and express love for others, no matter who they are, is a lesson for all of humankind.
They have mastered the language of love, of empathy, of seeing the humanity of all people. May we be wise enough to follow their lead.
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In case you missed it, check out our most recent updates on the work to develop a gene therapy for Cockayne syndrome.
UMass Chan receives $2.2M for research into rare genetic disorder Cockayne syndrome
Andelyn Biosciences, UMass Partner on Cockayne Syndrome
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