Behavior & Sensory Support

What you need to know

Children who have NF1 may have poorer social skills and more difficulty with peer interactions. They may have personality, behavioral, and quality of life differences. This may be due to learning difficulties, ADHD, low academic achievement, expressive and receptive difficulties, and visual perceptual problems (they may not perceive and interpret social cues). There may also be increased challenges for the child if one of their parents is affected and has learning or physical issues themselves.

Approximately ½ of individuals who have NF1 will have some degree of behavioral difficulties. No specific profile is noted and individuals respond to the same interventions as other children with these same conditions (e.g., individualized attention, positive behavioral supports and sometimes medication).

Possible Behavioral Difficulties

Behavioral characteristics of NF1 vary and may include:

  • anxiety
  • withdrawal
  • depression
  • impulsivity
  • hyperactivity
  • inattention
  • social skill deficit
  • inflexibility
  • ADHD

Psychosocial considerations

NF1 can result in disfigurement in a number of ways.

  • Skin neurofibromas may develop on the face or on exposed areas of the arms and legs. 
  • Larger and deeper plexiform (slow growing) neurofibromas can lead to overgrowth of a particular area of the body. 
  • Some of the rare bony complication of NF1 can lead to physical differences.   
    • Specifically, changes in the bones of the skull may occur over time and affect the eye socket. 
    • Pseudoarthrosis (a fracture of the bone that doesn't heal properly) can resuslt in amputation of part of a limb and the use of a brace or prosthesis.  

This can lead to questions and teasing, which may lead to

  • social isolation
  • poor self esteem
  • anxiety
  • depression.

What you can do

Helpful strategies:

  • Provide information and discuss similarities and challenges with the child’s peers.
  • Help develop confidence and focus on strengths.
  • Provide positive reinforcement.
  • Be consistent with directions, rules, and discipline.
  • Teach child appropriate social behaviors/skills (role model, friend groups).
  • Teach how to recognize facial expressions, body language, and moods in self and others.