Fragile X Syndrome

By Holli Forrest

What is Fragile X Syndrome?

Fragile X syndrome (FXS) is a genetic disorder that is the most common known cause of inherited intellectual disability. It occurs 1 in 4,000 males and 1 in 8,000 females. This disability has symptoms that range from mild to severe. Males tend to have more severe symptoms than females. Some of the symptoms are:
  • long facial features and larger ears in males
  • seizures in some
  • developmental delays
  • learning disabilities
  • social and behavioral problems
  • frequently occurs with Autism, Anxiety, and Attention Deficit Disorder
Here is a video that describes how Fragile X occurs: http://www.cdc.gov/ncbddd/fxs/video/fragilex-4.html


FXS Learning Styles

Many people with FXS go undiagnosed in the early years. Average age of diagnosis is 42 months. A key feature is being inflexible to change and over-stimulated by daily sensory life. Abstract thinking is hard for a student with FXS. They learn best by looking at the whole picture, then breaking it down into parts. Also, they learn in leaps and bounds. It is not uncommon for an FXS student to be on a stagnant plateau for awhile and then make a huge leap in progress.


Students with FXS cover a wide range of abilities and aptitudes. There is no one single definition for this disorder. Many students outperform expectations based on cognitive abilities. Some general suggestions for working with students with FXS are:


  • Maintain a calm classroom environment free from distracting stimuli
  • Don't underestimate a student based on an IQ test
  • Approach lessons in a familiar, repetitive way
  • Use simple visuals and model, model, model
  • Use visual coding or extra scaffolding when a task requires organization or planning
  • Give students the feeling of completion or closure on tasks
  • Assess with the "cloze" technique or fill in the blanks
  • Use an interest inventory to keep your students motivated
  • Keep going when you feel unmotivated by little progress
  • Reward with "high fives" instead of the sensory overload of a hug

Total Inclusion - one school's story

A school in Massachusetts shut down its special education department and moved to complete inclusion using a program called, "The Responsive Classroom". This approach uses the following key features:


  1. daily morning meeting
  2. proactive approach to discipline
  3. positive teacher language
  4. choices in learning

It promotes positive social skills which lends itself to a good model for inclusion. The school also hired an inclusion specialist and a behavior specialist in addition to the current special education team. Teachers were on board once they realized that this type of teaching gave them authority to mold their own classroom. Because the responsive classroom approach embraces differences, special education students are better able to recognize their strengths. Parents like the program, because all children benefit from the resources being spread out through the classroom. For example, a student with FXS has a full time aide. The aide spends a lot of time with that student, but she also gives help to the other kids in the classroom. It's a win-win situation!


Here is a link to video about the the responsive classroom approach: http://www.youtube.com/watch?v=G7qnPnP3O1w&feature=youtu.be.

References

  1. Center for Disease Control and Prevention. (2012, December 11 Published). Fragile X Syndrome. Center for Disease Control and Prevention. Retrieved June 28, 2013, from http://www.cdc.gov/ncbddd/fxs/index.html.
  2. United States National Library of Medicine. (2013, June 17 Published). Fragile X Syndrome. Genetic Home Reference: your guide to understanding genetic conditions. Retrieved June 28, 2013, from http://ghr.nlm.nih.gov/condition/fragile-x-syndrome.
  3. National Fragile X Foundation Education Project. (2004). Lesson Planning Guide for Students with Fragile X Syndrome: a practical approach for the classroom. Retrieved from http://www.fragilex.org/wp-content/uploads/2012/01/Lesson-Planning-Guide-for-Students-with-FXS.pdf.
  4. Northeast Foundation for Children. (2004). What is the Responsive Classroom Approach. Retrieved June 28, 2013, from http://www.youtube.com/watch?v=G7gnPnP301w&feature=youtu.be.
  5. Galley, M. (2004). No Separate Room. Education Week, 23(17), 30-31.