Purpose
The purpose of this topic is to provide information on Fragile X Syndrome. This topic aims to expand the knowledge base and capacity of pre-professionals, educators, and service providers. The Fragile X Syndrome topic includes the following materials: (a) syllabus, (b) professional development guide (slide deck), (c) case study, (d) learning activities, (e) multimedia illustrations, and (f) resources. This topic can also be adapted by faculty for use as course materials.
The sections of this topic are designed to be flexible. Sample syllabi serve as a resource to help you consider the key sections and content to include in a syllabus, as well as ideas for content specific to each topic area. PD guides can be used in their entirety to cover multiple PD sessions. Specific content in the topics, PD guides, multimedia illustrations (videos), learning activities, and resources can be used individually to enhance existing course content.

Objectives
As a result of active participation and successful engagement with this topic, students will be able to:
- Explain the importance of the newborn’s behavioral language and its implications for care delivery.
- Identify the evidence for brain protection based on behavioral cue-based, individualized care.
- Explain the importance of system-wide change required for consistent brain protective, individualized, behavior-based, family-integrated care.
- Describe newborn screening (NBS) and identify challenges currently facing NBS.
- Describe Fragile X syndrome as a prototype of some of these challenges.
- Describe Early Check, a newborn screening research project.
- Raise questions about the role of early intervention in a new world of medicalization of treatment.
- Justify the importance of newborn screening for developmental disabilities and delays for early intervention services.
Sample Syllabus
Case Study
Ethan is a 5-year-old boy diagnosed with Fragile X Syndrome (FXS), identified at 24 months after concerns about delayed speech, sensory sensitivities, and repetitive behaviors. Follow Ethan and his family as they progress through diagnosis, early intervention, preschool special education, and collaborative transition planning into kindergarten — with supports in communication, sensory regulation, behavior, and classroom adaptation.
Learning Activities
Multimedia Illustrations
- Title with a description
- Link to video
- Suggested citation
- Length of the video
- EI/ECSE standard
- DEC Recommended Practice
Resources
Resources to supplement the Syllabus:
National Fragile X Foundation
The Fragile X Society
American Academy of Pediatrics
Learning Module: Fragile X Syndrome Washington University
