Do you ever wonder why an individual with CHARGE syndrome has certain behaviors. Studies show that those living with CHARGE show similar characteristics across the spectrum. While we know that CHARGE individuals have different levels of functioning, we see similar pain management, sensory issues, anxiety and self regulation skills in many CHARGERS. The linked research review states-

“There are four major systems involved in self-regulation: cognition, behavior, emotion, and physiology. The body must coordinate these systems to achieve a goal after receiving input from internal and external sources. Cognitive self-regulation is the ability to regulate one’s thoughts and mental processes through attentional regulation, shifting, inhibition, and working memory to achieve a desired goal. Self-regulation of behavior requires an individual to monitor one’s behavior to achieve a goal, which may be done by inhibiting activity, regulating movement, or delaying gratification. Emotional self-regulation is the ability to react to situations with an emotional response that is appropriate in timeliness and intensity. Physical self-regulation involves the body’s ability to maintain homeostasis after receiving internal and external stimuli. This includes maintaining equilibrium within the somatic, endocrine, and autonomic nervous systems (Ramirez et al., 2014).

In the photo above, you can see Jacob in a head stand. While to some this may just look like Jacob being Jacob- this is actually a sensory processing skill of his. This was taken in Jacob’s hotel room during the CHARGE conference this past year. Jacob is using his self-regulation skills to rebalance his equilibrium and become more comfortable in his surroundings. We often find Jacob in poses like this!

Research Review: Behavior in CHARGE Syndrome

Abstract Reads- Unusual behavior is often associated with genetic syndromes, and may constitute a behavioral phenotype. In contrast to providing a psychiatric diagnosis, a behavioral phenotype describes what is unique to the behavior associated with different syndromes. While behaviors in CHARGE are as complex and variable as other aspects of the syndrome, there are some commonalities that raise the question of common sources for these behaviors. This article addresses how pain, sensory issues, and anxiety may impact the behavior of individuals with CHARGE syndrome, and how the development of self-regulation skills might help to mitigate some of the behaviors.

-In this research review you will find information about behaviors and coping mechinisms individuals living with CHARGE Syndrome; such as pain, sensory issues, anxiety and self regulation.

Follow this link to Wiley Medical Genetics full article