In this episode, we sit down with Kristina Johnson, a professor at Northeastern University and mother to her son Felix, who was diagnosed with MEF2C haploinsufficiency syndrome at just nine months old. Kristina shares her family’s journey — from the early signs of developmental delays that were initially dismissed, to the long and isolating road toward diagnosis, to the ways her personal and professional paths converged as she transitioned from physics to a career in child development and communication sciences.
The conversation highlights the importance of parental advocacy, the emotional realities of raising a child with complex needs, and the urgent need for better research methodologies to understand developmental trajectories. Kristina introduces the ROSCO project, a groundbreaking effort to reframe how communication is measured in children with neurodevelopmental disorders, centering caregiver insights, vocalizations, and new technologies like AI as powerful tools for growth.
Subjects covered include:
Felix’s diagnosis at nine months and the challenges of early detection
The role of parental intuition in navigating healthcare systems
Isolation and resilience in the journey to diagnosis
The transition from physics to communication sciences research
The ROSCO project’s new framework for assessing communication
Why caregiver input is vital in shaping communication metrics
Emerging technologies (including AI) in communication research
Understanding vocalizations as a new language
Community collaboration and the challenges of study recruitment
Empowering children through agency, tools, and effective research
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