Impulsive Behaviors and CdLS
Some individuals with CdLS present with impulsive behaviors. Impulsivity can take many forms such as responding too soon, running off and grabbing items/people. Sometimes, these can lead to an individual becoming angry/explosive which can cause harm to self or others.
The first part is to realize that you are not alone. When challenging behaviors are seen at home, they are often happening in school, day programs and/or in the community, too. Once a behavior has been identified, clearly define the specific behavior, so that you can talk with others. Reach out to staff at the individual’s school, day placement and/or home to discuss the behavior and to build a team of individuals who will support and assist you in this process.
If behaviors are severe, persistent or impacting the individual’s ability to be as independent as possible, seek a referral from someone familiar with behavior challenges such as a clinical psychologist, Board Certified Behavior Analyst, or psychiatrist. Sometimes, assessment and treatment would incorporate both a behavior plan along with possible medication management. The combination of these has been evaluated to be more effective across a variety of behaviors as well as a variety of developmental disabilities.
To begin the process, start by ruling out any medical possibilities such as pain or discomfort, especially from gastrointestinal issues. Once medical issues have been addressed, it is important to evaluate the environment to identify any possible triggers for the behaviors. To do this, document what happens before, during and after the behavior occurs. These records will allow you and your team to develop possible hypotheses about why the behavior is occurring and under what circumstances the behavior occurs. Possible hypotheses include: to get attention, to get something the individual wants, to get out of doing something the individual does not want to do or to get sensory reinforcement (i.e., internal stimulation).
Once a hypothesis has been developed, a treatment needs to be designed to match the hypothesis. If a behavior is hypothesized to occur to get attention, the individual needs to be taught an appropriate way to get attention (i.e., raise his/her hand to respond in class) while the challenging behavior no longer receives attention. Treatment strategies could also include: redirecting to other activities, reinforcing appropriate behaviors and teaching coping strategies (i.e., behavioral relaxation training, deep breathing).
For behaviors that are hypothesized to be related to anxiety, make sure the individual knows what to expect in the situation, use a picture schedule, develop a social story and/or provide warnings about any changes.
To evaluate effective treatments, continue data collection throughout assessment and treatment process. It is often the case that challenging behaviors may get worse before they get better, so be prepared. When families change how they respond, the individual with CdLS may continue to use the challenging behavior because the behavior had previously been responded to in a different way. Stick with the treatment and remember to consult with your team of professionals and re-evaluate if the behavior plan is not improving.
Reaching Out, The Newsletter of the Cornelia de Lange Syndrome (CdLS) USA Foundation, Inc., published on 1 okt. 2017
