School, Education and Fragile X Syndrome

Children and adults with Fragile X syndrome can benefit from education and schooling. With appropriate support and accommodations, they can develop their cognitive and social skills and make progress in their academic pursuits. Special education programs and therapies, such as speech therapy and occupational therapy, can help them overcome their challenges and achieve their full potential.

Info Series

  • Back to School Resources
  • Introduction to Assessing Individuals With FXS

Treatment Recommendations

  • Educational Recommendations for Students with Fragile X Syndrome: General
  • Early Childhood Developmental and Educational Guidelines for Children with Fragile X Syndrome
  • Educational Recommendations for Fragile X Syndrome: Elementary School
  • Educational Guidelines for Fragile X Syndrome Middle School and High School
  • An Introduction to Assessing Children with Fragile X Syndrome
  • Assessment of Fragile X Syndrome for Clinicians

From Our Blog

More Resources

From Our Info Series

All of our Info Series are available to read online and as a PDF download (in both English and Spanish) designed to be easily printable on your home or office printer. You may also want to browse our other available Info Series flyers on various topics for both FXS and premutation carriers.

Link to Info Series: Back to School Resources.

For teachers and anyone else interacting with students with Fragile X syndrome.

Link to Info Series: Introduction to Assessing Individuals With FXS

Various transportation options and some tips on easing into new experiences.

Treatment Recommendations

Links to General educational recommendations for students with Fragile X syndrome.

A basic framework for understanding different aspects of the educational system and an overview of the terminology. Also see the other education treatment recommendations here by age, including early childhood development, and elementary, middle, and high school.

Links to Early Childhood Developmental and Educational Guidelines for Children with Fragile X Syndrome recommendations.

For all children within the early childhood age range (birth to 5 years) and especially for young children with identified disabilities associated with a diagnosis, like Fragile X syndrome, inclusive, nurturing, and developmentally appropriate environments and caregiving are essential to growth and development.

Links to Educational Recommendations for Fragile X Syndrome: Elementary School recommendations.

Information regarding legal educational policies and recommendations as well as promising practices for academic and adaptive functioning. It is important to note that school districts across the country vary in their interpretation and application of federal guidelines and policies. As such, it is important to use the contents of this document as recommendations only.

Links to Educational Guidelines for Fragile X Syndrome Middle School and High School recommendations.

Information regarding legal educational policies and guidelines as well as promising practices for academic, vocational, and independent living progress.

Links to An Introduction to Assessing Children with Fragile X Syndrome recommendations.

Assessment of individuals with Fragile X syndrome has numerous challenges, ranging from choice and limitations of instruments to behavioral and emotional factors in the individual that may impact the testing process to scoring and interpretation. Also see our version of this document (below) for professionals who wish to learn more about specific assessment measures and tools.

Links to Assessment of Fragile X Syndrome for Clinicians recommendations.

This document covers several important general considerations for the clinical assessment of people with FXS, including principles of measure selection, developmental considerations, preparation and approach to testing, and accommodations to the testing process that may yield more accurate results. Also see our version of this document (above) written for families and caretakers.

More

School Transition Strategies
A new school can be tough for any child, especially so for children living with Fragile X syndrome. To address this often difficult milestone, our in-house expert on education and support services created this essential list of tips and strategies based on her and other Fragile X parents’ experiences to help you and your child navigate this important transition.

The Value of a Detailed School Schedule
The focus of this article is the schedule Jayne Dixon Weber developed during her son Ian’s 8th grade and with some variations all through high school.

10 Things Teachers Should Know About Fragile X Syndrome: Strengths, Challenges, and How They Learn
The most effective way to help your student get the most from their time at school is to minimize the likelihood of hyperarousal and anxiety, which can maximize their focus and cooperation.

Lesson Planning Guide (PDF)
A wealth of practical information that includes background on FXS, descriptions of behavior and learning styles, discussion of educational and community resources, and sample lesson plans for children with FXS at a variety of developmental levels.

Assistive Technology and the IEP (PDF)
The concept of assistive technology can be overwhelming for many families and individualized education program (IEP) teams. This document provides parents with useful information about assistive technology and how to go about addressing it as part of their child’s IEP.

Newborn, Carrier, and Early Childhood Screening Recommendations for Fragile X
This article from Pediatrics discusses the importance of early diagnosis and management of family members at risk for or affected by FMR1 mutations.