Finding Strength in Fragile-X Syndrome

While autism receives a great deal of attention, a related disorder, Fragile X syndrome, is less well known.  To raise awareness and advocacy for the condition, the National Fragile X Foundation has dedicated July as National Fragile X Awareness Month.  In addition, Congress has officially recognized July 22 as Fragile X Awareness Day.

boy with Fragile X syndome

This boy shows some of the physical characteristics of Fragile X syndrome, including an elongated face and large, round protruding ears. Source: Peter Saxxon, Wikimedia Commons.

 

Fragile X syndrome (FXS) is a genetic condition, one that involves the X chromosome.  FXS is usually associated with a moderate to severe intellectual disability.  Noteworthy is that in nearly half of all children, the behavioral characteristics of FXS mirror those of the autism spectrum; they also meet the same criteria for diagnosis.  Examples of these tell-tale signs include stereotyped behaviors, such as hand flapping, along with generalized anxiety, social and emotional challenges, sensory challenges, disorganized speech, and ADHD.  As with autism, boys are affected more often than girls and, in most cases, with greater severity.  Likewise, there is no cure for FXS.  Nevertheless, most students can benefit from Applied Behavior Analysis (ABA) and other special education services.  Children with more severe incidences of FXS will need to be taught skills daily living, including self-feeding, toileting, and personal hygiene.

In many children with FXS executive functioning (i.e., basic cognitive and metacognitive control) can be impaired, a daily planner can be an essential tool, whether this be in the form of a chart or a smartphone app.  The latter is an example of a simple but highly effective form of basic assistive technology.

Most important, these skills can be taught and learned.  As with autism, children and adults thrive on routine; any changes can require a great deal of preparation, along with empathy and patience on the part of the caretaker.  Taken together, these skills are critical for the success of anyone with FXS to live as independently as possible.

 

 

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One thought on “Finding Strength in Fragile-X Syndrome

  1. Pingback: Finding Strength in Fragile-X Syndrome — Celebrating Individual Abilities | The Daily Advocate By Painspeaks

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