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Education & Treatment |
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Intervening With Fragile X Syndrome
Diagnosis, Early Intervention and Education, Related Therapies, Advocacy, Classrooms and Instruction, Medication This page describes interventions currently available for children with fragile X syndrome. There is significant variability in how FXS affects development in individuals. Consequently, there is not a single recommended course of treatment for individuals with FXS. Families have a range of options to consider. Diagnosis
For an accurate diagnosis, seek DNA testing at a pediatric genetics clinic. Licensed genetic counselors at the clinic will provide information about risks for other family members and provide support during the process of informing extended family members of the need for testing. Find a pediatric genetics clinic by calling the nearest university hospital or child development clinic. Early Intervention & Education
Advocacy Locate a Parent Training Center for assistance in understanding the provisions of IDEA and for help advocating for your child. There is a center in every state. [Visit the National Parent Training Center website] Contact a family support network/group for help finding information and local resources.
The National Fragile X Foundation has a directory of state and local Fragile X Parent Resource Centers. Learn about fragile X syndrome Interest is growing in etiology-specific treatments and interventions as more syndromes are being identified with genetic markers. The advances in biological science have allowed behavioral researchers to identify phenotypes, or lists of commonly observed characteristics, for many of the genetic illnesses. Researchers are compiling data on the unique cognitive, physical, behavioral, and neurological characteristics of identified syndromes that can be useful in educational, pharmacological, and other intervention methods. Knowledge about the characteristics of FXS can be a helpful advocacy tool for parents since many professionals may not be familiar with the specific features or recommended practices for affected individuals. [Click for Resource List.] Classrooms & InstructionChoosing the most appropriate educational setting for a preschooler or school-aged child with FXS can be challenging. Matching a child's needs and his family's goals with the optimal educational setting requires effort, planning, and patience. Being familiar with the features of the syndrome can provide guidance in placement planning. Critical areas to consider are communication skills, sensory functioning, and attention and activity level. Other educational issues of importance to parents are discussed below. How to Recognize a Quality ClassroomOne important factor in the fit between a child and school is classroom quality. Children with disabilities are children first, and they, like their typically developing peers, need classrooms that offer developmentally appropriate practices. The National Association for the Education of Young Children has developed guidelines that describe developmentally appropriate practices (DAP) for young children, or qualities that should ideally be present in a child's environment to promote optimal growth. Beyond this, children with disabilities must have an individualized education plan (IEP) that specifies their goals so that instruction can be individualized to meet their needs. High quality classrooms employ practices to address developmental and individual needs. Practices in Early Elementary Classrooms (PEEC) is an assessment tool to measure the degree to which DAP and individualized programming are present in a classroom. A brief checklist of quailty classroom practices (PDF file, 9K), adapted from the PEEC, may be helpful to parents. Educational ModificationsA special educator uses a variety of tools to meet the needs of each student with an IEP. Examples of educational modifications are special equipment, strategic room arrangement, behavior management system, visual communication techniques, and shortened assignments. There are many others. Effective educational modifications for students with FXS have not been well researched, but data on the development of children with FXS suggests a great deal of variability. Therefore, individualized planning is necessary even for children with the same disability. In a survey, teachers and other practitioners working with children with fragile X syndrome were asked what advice they would offer to another teacher who is about to work with a child with FXS. The two most frequent suggestions were to develop a consistent routine with structured activities and a structured environment and to read as much as possible about children with FXS.
Teachers and other practitioners who were surveyed as part of the CFXP Longitudinal Study listed behavior of their student with FXS as their greatest concern. Communication delays, sensory processing difficulties, autistic-like behaviors, hyperarousal, and ADHD (attention deficit hyperactivity disorder) symptoms may be underlying causes of behavior problems in FXS.
One of the principles of IDEA (Individuals with Disabilities Education Act) is that individuals are entitled to an education in the least restrictive environment. Parents and professionals have become increasingly vocal about the benefits of inclusion for children with special needs and their typically developing peers. Little research is available on the benefits of inclusion for children with FXS, but many parents express interest in some portion of their child's day being spent included in a general education class. The child's individual strengths and needs should be assessed as part of inclusion planning to optimize the experience.
Medication is frequently prescribed to treat behavioral symptoms associated with FXS such as hyperactivity, short attention span, distractibility, anxiety, severe tantrums, mood lability, aggression, and self-injury. Stimulants and sympatholytics are most commonly prescribed, but other medications such as anti-depressants and anti-anxiety medications are also used. Data collected from the 75 participants in the CFXP longitudinal study is being analyzed to describe in more detail the prevalence and trends in medication use in the sample. It is important to note however, that there have been few controlled studies of medications to treat children or adults with FXS. The studies of folic acid demonstrated limited effectiveness in the treatment of children or adults with FXS. Therefore, it is advisable for any parent considering medication for their child to seek help from a qualified medical professional. A specialist such as a developmental pediatrician, psychiatrist, or neurologist should conduct a thorough evaluation of a child. In addition to a physical examination, the doctor will ask parents to provide information about behavioral concerns and teachers to complete a behavior rating scale or write observations about classroom behavior. The doctor should outline any risks and side effects as well as the potential benefits of specific medications to help parents weigh the decision. The child should be closely monitored to assess the impact of the medication. A Medication Guide for Fragile X Syndrome by Michael Tranfaglia, MD is a publication describing target symptoms common in FXS and the types of medications frequently used to treat them. It is available from the FRAXA Research Foundation. 
Kaplan Publishing Company
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If you suspect that a child has fragile X syndrome, confirm the diagnosis with genetic testing.
For young children with FXS, or any type of developmental disability, the
