By: Julia O’Connor, Ph.D., Psychologist, Kennedy Krieger Institute and CdLS Foundation Professional Development Committee (PDC) Member
Individuals with CdLS experience significant challenges including behavioral health concerns, such as anxiety, depression, and behavior issues.
Anxiety has been estimated to occur in 10-64% of individuals with CdLS and includes separation anxiety, social avoidance as well as selective mutism. Depression has been reported in 11-50% and presents as low mood, decreased interests or excessive irritability, especially in adolescence and early adulthood (Groves, Oliver, & Moss, 2021).
These underlying mental health diagnoses may manifest as overt behaviors in CdLS. For example, self-injurious behavior (SIB) may be how they expresses anxiety or depression. Alternatively, these overt behaviors may be a means to communicate. The prevalence rate for significant SIB has been reported to be 55.6% in people with CdLS (Oliver, Sloneem, Hall, & Arron, 2009). Additionally, 32% of individuals exhibited physical aggression and 41% engaged in property destruction.
Given these statistics, it is important to monitor mental health and problem behaviors. To address these concerns, first rule out medical/physiological problems. Additionally, address head directed SIB and seek medical evaluation as there could be internal injuries. Protective equipment such as helmets, arm guards, and protective clothing are options to prevent tissue damage.
For ongoing behavioral issues, a referral to a behavior psychologist/analyst would be appropriate. Using the techniques of applied behavior analysis, the therapist conducts a functional behavioral assessment. Function is determined by evaluating the contexts in which the behaviors occur and gathering information about antecedents, behaviors, and consequences.
Once function is identified, a behavior plan is developed to reduce the problem behavior while increasing appropriate skills. Behavior plans may include treatment components such as: structured schedule, leisure activities, as well as teaching communication, adaptive skills, and coping strategies. All caregivers should be trained in the behavior plan, so the plan can be implemented consistently and to monitor effectiveness.
The behavior plan may also include planned ignoring, redirection, and blocking. If indicated, it is recommended that you consult a psychiatrist/developmental pediatrician with experience in CdLS.
The COVID-19 pandemic greatly affected everyone’s mental health and behavior, but further increased feelings of physical and mental exhaustion, isolation, stress, and disconnect from the community for families of individuals with CdLS. Access to community resources were greatly limited as evidenced by lack of in-person services and supports as well as increased staff turnover.
Finally, practicing self-care can improve caregiver physical, mental, social, and emotional well-being. Without their own mental well-being, caregivers will not be able to address the well-being of their child.
Key areas are getting adequate sleep, eating healthy, getting exercise, relaxing, seeking social supports.
It is important to identify which self-care strategies work for you and to make a point of doing them as often as possible. Start by building one new habit at a time and explore other activities to expand your well-being toolkit.
Overall, it is important to not only address the behavioral and mental health concerns in individuals with CdLS, but also remember to focus on personal well-being for the caregivers.
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