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boyonfloorBehaviors that are considered challenging are commonly seen in CHARGE syndrome.  These behaviors differ from those seen in other syndromes that include deafblindness and those that do not.  The reasons for these behaviors can vary and may be due to multisensory impairments, inability to self-regulate, and issues with arousal.  Learning to understand the function of these behaviors and that these behaviors serve as communication is important.
Behavior in CHARGE








American Journal of Medical Genetics Special Series of Articles on Behavior in CHARGE Syndrome – A symposium focusing on behaviors in CHARGE syndrome was held at the 6th International CHARGE Syndrome Conference in 2003.  This series of articles is based on the papers presented at the conference and three additional papers.  A range of topics relating to behaviors in CHARGE are discussed, including:

  • repetitive behaviors
  • behavioral features of CHARGE compared to other syndromes
  • autisitic-like behaviors in CHARGE
  • behavioral profiles and developmental/behavioral data
  • adaptive behaviors
  • reducing challenging behavior and fostering effective learning
  • factors related to communication development
  • parent perspectives on behavior
  • executive functioning

CHARGE Syndrome Factsheet: Behavior from Sense UK

Behavior in CHARGE syndrome – Specific unusual behaviors are often associated with specific genetic syndromes. This is sometimes described as a behavioral phenotype. In contrast to providing a psychiatric diagnosis, a behavioral phenotype describes what is unique to the behavior associated with specific syndromes. While behaviors in CHARGE are as complex and variable as other aspects of the syndrome, there are some commonalities that raise the possibility of common sources for these behaviors. This article addresses how pain, sensory issues, and anxiety may impact the behavior of individuals with CS, and how the development of self-regulation skills might help to mitigate some of these behaviors.
Timothy S. Hartshorne, Kasee K. Stratton, David Brown, Shanti Madhavan-Brown and Megan C. Schmittel

Self – Regulation in Individuals with CHARGE syndrome – Self-regulation is our capacity to manage our responses to things that happen in our lives. Self-regulation as a deficit in individuals with CHARGE syndrome has been on our minds for a number of years. But it was in October of 2009 that we sat together in Jude’s office in Bergen, Norway, and created the four dimensional model of self-regulation. This Monograph is based on a series of articles that appeared in DbI Review from January, 2014 to January 2016. We hope that the publication of this Monograph might lead to a wider audience.
Timothy S. Hartshorne and Jude T. Nicholas










Presentation Handouts

Behavior as self-regulatory adaptation, or “I can’t believe my child just did that!” – Tim Hartshorne

Identifying Effective Positive Behavioral Supports for Young Adults with CHARGE Syndrome – Susan Bashinksi

Fostering Self-Regulation Strategies in CHARGE Syndrome – Maria Ramirez

Anticipation & Behavior – Tim Hartshorne

Which Way is Up? – How behavior reveals sensory processing differences in children with CHARGE Syndrome – Kate Beals

Quality Not Quantity – Thoughts on Communication, Behaviour, Play and Passions – Rob Last

Why Does My Child Do That? Explanation of and Strategies for Dealing with Compulsive Behaviors and OCD in CHARGE Syndrome – Nancy Salem-Hartshorne


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CHARGE Syndrome Foundation Webinars:

Top Ten Strategies for Promoting Positive Behavior

Why Does My Child Do That? Compulsive Behaviors and OCD in CHARGE Syndrome 

Perkins Webcast: Behavioral Issues with Tim Hartshorne











Origins of Behaviors: A CHARGE Syndrome Behaviors Checklist