University of Minnesota Center for Genomics Engineering on “Celebrating Emelia: Science for All”
Continuing my closer look at some of the news items from our recent news roundup, I now turn to a June 26th article on the University of Minnesota Center for Genomics Engineering website entitled Celebrating Emelia: Science for All.
Emelia, 11 years old, is described as “bright, bold, and brilliant,” and as having “a rare genetic mutation known as DDX3X.” Steph Kennelly, the author of this article and also the program manager for the Center for Genome Engineering, claims that DDX3C
is associated with non-speaking autism [true] involving a disconnect between her brain and body [false]. The condition is often described in medical literature as being linked to intellectual disabilities and developmental delays [true]—but Emelia challenges that definition...
She challenges it through S2C, or what Kennelly simply calls “spelling”:
[Emelia] has learned to communicate using a method called spelling—pointing to or typing letters one at a time to form words, thoughts, and ideas. And what Emelia has to say is nothing short of extraordinary.
Completely unmentioned throughout this article is the role of the “communication partner” in “spelling”—i.e., in sitting or standing within auditory, visual, and/or tactile cueing range of the “speller” and, typically, holding up the letterboard and (inevitably) moving it around.
What Emelia has to say through S2C/”spelling” is so extraordinary that, as Kennelly notes, she’s featured “in Episode 7 of the popular podcast The Telepathy Tapes.” But Emelia’s presence on the Telepathy Tapes, naturally, is due, not to the overall extraordinariness of what she allegedly has to say, but, more specifically, to her alleged telepathic powers. The non-paranormal explanation for Emelia’s telepathic powers—her purported ability to type things that only her communication partner knows—is that her communication partner is the one controlling the letters that Emelia points to.
Emelia purportedly also knows multiple languages. Her communication partner reports that “She in one sentence went from Spanish to English to Portuguese” and that she also knows Hebrew and hieroglyphics. Telepathy Tapes producer Ky Dickens proposes that she picked up the latter from the “realm of fundamental consciousness,” where there is no language, and where, therefore, “all communication would be by telepathy.” Dickens also proposes that Emelia has precognition, “meaning she can predict things.”
A slice of what comes up right away when you search “telepathy” on YouTube these days. (Telepathy being one of the elephants in the room here).
But Kennelly doesn’t seem to want to discuss Emelia’s paranormal powers here on the University of Minnesota Center for Genome Engineering website. Instead, she writes:
Through this episode, we learned about [Emelia’s] passion for science, and how her diagnosis has led her to take a deep interest in genetics. Her dream? To one day become a genetic researcher or clinician.
In the Telepathy Tapes podcast, the only source on Emelia’s alleged interests is her mother, and in her mother’s words, those interests sound a bit more circumscribed:
She wants to be a genetics doctor. She knows the challenge is that a lot of kids are going through being nonverbal and she wants to help them.
As Kennelly reports:
We were so inspired that we invited Emelia and her family to spend a day in the Moriarity/Webber lab at the Center for Genome Engineering. During her visit, she met scientists, explored interactive models, attended presentations, and toured the lab spaces where we study the very conditions that shape lives like hers. Her questions were thoughtful. Her insights were meaningful.
During her visit, PhD research assistant Ella Eaton shared her work on developing a base editor therapy for a founder mutation of SCID-A, a rare immune disorder. While Emelia may have seemed quiet at first glance, she was deeply engaged in the discussion. She asked thoughtful clarifying questions—just like any aspiring young scientist would.
She wanted to know how the Cas9 enzyme finds the right spot in the genome, and quickly grasped how the 20-base sequence of the guide RNA leads the enzyme to its target. She also asked whether someone could have the SCID-A mutation without symptoms, prompting a conversation about recessive genetic conditions and how carrier status works. These are advanced concepts for anyone—let alone an 11-year-old—and yet, Emelia was right there with us, absorbing, questioning, learning.
Our conversation extended to the genetics of DDX3X and the observation that many autistic individuals experience chronic gastrointestinal issues. This led to a discussion on the brain-gut connection and the future of research into the gut microbiome and barrier function. Emelia may not yet have all the scientific vocabulary, but her questions are already aligned with some of the most pressing research themes of our time.
All this would be beyond even a very intelligent 10-year-old, not to mention one with DDX3X, in which the rate of significant, co-occuring intellectual disability, is, according to a recent, comprehensive, 2023 study, extremely high. This study found that, out of a sample of 101 cases, 94% had an intellectual disability, with IQ scores ranging from average (only 1 out of these 101 cases) to severe.
DDX3X Syndrome, by ChatGPT. (The other elephant in the room).
But somehow such findings are either unknown to, or don’t raise any questions at, the University of Minnesota Center for Genome Engineering lab. Though Kennelly makes no mention of a communication partner, the more plausible explanation for insights attributed to her in the lab, and the only non-paranormal explanation for Emelia’s raison d'être on the Telepathy Tapes podcast—is that an adult, non-disabled communication partner is controlling her messages.
Only at one point does Kennelly’s narrative turn from the S2C-generated output to Emelia’s unimpeded behavior:
One of our favorite moments came when Emelia got to pipette for the first time. True to form, she used it to squirt us with water, giggling with delight. It was the perfect reminder that behind all her brilliance, Emelia is also just a kid who loves to have fun.
How she is able to do this despite the above-alleged “disconnect between her brain and body” is left unexplained. But here, at least, Emelia is clearly being herself.
Kennelly insists that
Emelia is a powerful example of how much potential lies beyond conventional expectations.
To this, she adds the usual neurodiversity-promoting bromides:
As a scientific community, we have a responsibility, and an opportunity, to do better. We must celebrate and nurture all forms of intelligence, creating inclusive spaces where neurodivergent voices are not only heard but truly valued and uplifted.
And she concludes with a quote from one of the S2C messages generated by Emelia:
“Sharing what I know is one of my biggest challenges. And I know a lot! Please don’t underestimate me.”
To this Kennelly responds:
We hear you, Emelia. Loud and clear.
Unfortunately, I’m not sure they do.
REFERENCES
Tess et al. (2023). DDX3X Syndrome: Summary of Findings and Recommendations for Evaluation and Care Levy, Pediatric Neurology, Volume 138, 87 - 94
