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Behavior & Sensory Support

Individuals with MECP2 duplication should have neuropsychological evaluation to assess abilities and offer support for behavior challenges.  Boys with this duplication may have autistic-like features (including anxiety and stereotypic hand movements).  Female carriers of MECP2 duplication who have normal intelligence may have neuropsychiatric symptoms including depression, anxiety, and autistic features.

What you need to know

Social

  • Social opportunities allow children to express a broad range of feelings and form close bonds and real friendships with others.
  • They should be part of typical family and class activities, household chores, and perform daily living skills.
  • They may have interests in recreation, music, and physical activity.
  • Behavioral supports may be helpful in limiting the less desirable behaviors that are socially disruptive and/or self-injurious.

What you can do

Be proactive with behavioral supports
  • Discuss involvement of behavioral or mental health professionals, and/or medications with the parents as needed.
  • Firm directions, rules, and clear expectations are helpful.
Many children have difficulty regulating emotions and behavior. This is especially true when handling unplanned changes
  • Talk through expected changes.
  • They usually thrive with consistency and routine. They can be easily upset with disruption.
  • Prepare for any change in schedule.
  • Provide a safe area to share emotions.
  • Teach and model use of words and/or pictures in sharing emotions.
  • Teach, emphasize, and reinforce behaviors you want to see.
  • Make sure they have an effective communication system.
Provide social cues and coaching
  • Provide information to and discuss differences with the child’s peers.
  • Help develop confidence and focus on strengths.
  • Provide positive reinforcement.
  • Teach appropriate social behaviors/skills (e.g., how to ask a friend to play).
  • Teach how to recognize facial expressions, body language, and moods in others.
  • Teach how to regulate own body – sensory strategies may be helpful.