Katherine Ellis is co-author of a recently published paper discussing how medical practitioners can provide a holistic and accurate delivery of a fragile X diagnosis to families, recognising both the strengths and challenges experienced by this community. This article was led by parents and caregivers of people with fragile X syndrome, with input from researchers, including Katherine. Katherine specifically contributed to the scientific discussion of the available evidence outlining the strengths associated with fragile X syndrome, and reflections how the medical model may have contributed to the research gap on the the positive attributes of those with Fragile X Syndrome. With acknowledging such strengths, this article aims to enhance our understanding and improve support for families navigating a Fragile X diagnosis.

Read the full paper here:
Herring, J., Johnson, K., Scerif, G., Weight, E., Richstein, J., Crawford, H., Robinson, H., Gawarammana, R., & Ellis, K. (2024). The joys of fragile X: Understanding the strengths of fragile X and delivering a diagnosis in a helpful, holistic way. Institute of Neurodiversity. View here.