Rett Syndrome is a genetically-based autism spectrum disorder which affects almost only girls. It's uncommon, quite severe, and leads to serious physical challenges. Unlike most Autism Spectrum Disorders, a Rett Syndrome diagnosis can be verified through a blood test. Despite its challenges, people with Rett Syndrome can lead full lives with support, therapy and love. The resources below should help parents coping with Rett Syndrome to get started with seeking diagnosis, treatments and support.
1. What Is Rett Syndrome?
Here's a basic, straightforward description of Rett Syndrome, along with links for more information.
2. Rett Syndrome in Detail
This article provides more in-depth information about Rett Syndrome, including an overview of diagnosis and treatments.
3. Rett Syndrome Research
Research finds that Rett Syndrome is related to the mitochondrial gene. Read more about the findings and link to study reports.
4. Preparing the School for Your Child With Rett Syndrome
Special Parenting Guide Teri Mauro's article provides parents with tools they can use to prepare teachers and administrators for their daughter with Rett Syndrome. Included are links to fact sheets parents can print and distribute.
5. Rett Syndrome: An Overview for Professionals
This awesome PowerPoint from the School Based Behavioral Health website is an introduction to Rett Syndrome in the school setting. It's a perfect for parents, teachers and administrators to use in preparing to teach and include a girl with Rett Syndrome.
6. International Rett Syndrome Foundation
This massive site provides a wealth of information, hints, tips, research updates, fundraising news and much more.
7. RettNett
Connect with parents and practioners through RettNett, a free moderated listserve for anyone interested in discussing issues related to Rett Syndrome.
8. Share Strategies for Managing Rett Syndrome
If you're an experienced parent or therapist, you may have developed some great strategies for helping a child with Rett Syndrome to communicate, learn and have fun. Share your tips here!
