Purpose
The purpose of this topic is to provide information on Rett Syndrome. This topic aims to expand the knowledge base and capacity of pre-professionals, educators, and service providers. The Rett 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:
- Recognize diagnostic characteristics of Rett Syndrome.
- Discuss impacts on body systems and functions and comorbidities/co-occurring conditions which are observed with Rett Syndrome.
- Identify evidence based therapeutic interventions for activities such as mobility, activities of daily living and communication.
- Identify parent perceptions and support resources.
Sample Syllabus
PD Guide
PowerPoint:
This presentation explores the genetic, neurological, and developmental features of this rare neurodevelopmental disorder, caused primarily by mutations in the MECP2 gene on the X chromosome. Affecting mainly females, Rett syndrome typically presents after a period of normal early development, followed by regression in motor, communication, and cognitive skills between 6–18 months of age. The module outlines the four clinical stages—ranging from early loss of function to later stability—and highlights common co-occurring conditions such as seizures, apraxia, scoliosis, and breathing irregularities. Emphasis is placed on early intervention, including physical, occupational, and speech therapy, with strong focus on augmentative and alternative communication (AAC) and eye-gaze technology to promote interaction and literacy. Learners also examine family-centered supports, interdisciplinary collaboration, and inclusive education strategies that enhance participation and quality of life for girls and women with Rett syndrome and their families.
Case Study
Emma is a 20-month-old girl with Rett Syndrome, experiencing skill regression, repetitive hand movements, feeding challenges, and delays in communication and motor development. Follow Emma and her family as they move through diagnosis, assessment, IFSP planning, feeding intervention, and home-based early intervention services.
Learning Activities
Multimedia Illustrations
- Title with a description
- Link to video
- Suggested citation
- Length of the video
- EI/ECSE standard
- DEC Recommended Practice
Resources
RTT-Specific Resources
Family Support Resources
- Finding a Clinic: https://www.rettsyndrome.org/for-families/rett-syndrome-clinics/
- Education: https://www.rettsyndrome.org/for-families/education/
Family and Community Engagement