Behavior & Sensory Support

What you need to know

Behavioral and psychological assessments are important for individuals with fragile X. They can help determine the presence of concentration/attention problems, anxiety, obsessive-compulsive disorder, aggression, or depression.

Females with fragile X syndrome full mutation may have:

  • Social anxiety
  • Shyness
  • Gaze avoidance

Males with fragile X syndrome full mutation may have:

  • Autism (15-25%)
    • An additional 50-90% of individuals with fragile X syndrome have symptoms of autism including poor eye contact, hand flapping, hand biting, perseveration in speech and tactile defensiveness.
    • Autism spectrum disorder and/or attention deficit hyperactivity disorder may be seen in permutation carriers
  • Management of behavior using drugs 
    • No particular treatment has been found to be uniquely beneficial. Therapy must be individual and closely monitored.
    • Medication may be necessary for ADHD and/or anxiety or depression.
  • Often tactile defensiveness  
  • Poor eye contact
  • Perseverative speech
  • Problems in impulse control
  • Easily distracted
  • Often fidgety or overactive
  • Postural control challenges
  • Difficulty with self control
  • Sensory defensiveness
  • Task avoidance
  • Poor understanding of expectations
  • Individuals with fragile X have difficulty with self-regulatory function. This causes difficulty with
    • Attention
    • Anxiety
    • Modulation of activity level
    • Easily aroused in situations with excessive auditory, visual and tactile stimuli.
      • This may lead to tantrums or increased hyperactivity
      • Situations like the cafeteria, theater, and/or gym may be challenging  
    • Arousal states
    • Impulsivity

What you can do

Helpful hints that may work for children with Fragile X

  • Quiet spaces when needed
  • Small group instruction
  • Calming activities
  • Clear concrete plans and visual cues (i.e. visual sign for quiet)
  • Proactive behavioral plans that  include goals, rewards, and consequences for appropriate behavior
  • Seating in back section of room and/or allow seating near exit.
  • Structure and predictability
  • Reduced level of environmental noise/sound, natural lightening, and avoidance of crowded areas.
  • Predictable transitions and signal with visual cues
  • Non verbal cues and feed back
  • Role play behavioral consequences
  • Physical activities
  • Alternative to stressful events
  • Breaks and downtime if needed
  • Work on conversational skills and friendships