Question:
My daughter makes noises (low growl humming noise) while she is watching videos on her iPad. She rarely makes these noises when not on her iPad. I remind her to be conscious of the noises but she appears to be unaware. Otherwise, she exhibits no other STIM behaviors and is very well adjusted and verbal. I would like to know if there is a specialist I can have her evaluated to know more about why she makes these noises. We live on Long Island NY and are looking for a wholistic approach to handling her health.
Answer:
Many people with Down syndrome will make noises or do motor activities (e.g., arm movements) that appear to be self-stimulatory. These are called stereotypies (also known as self-stimulatory behavior). They can include making sounds or doing repetitive movements or repetitively moving objects. The “behavior” is less likely to occur when engaged in activity that requires more attention. For many individuals, it is more likely to occur with “downtime”- such as watching an iPad. They may also be seen with an increase in emotional stimulation such as exciting or anxiety-provoking situations.
When discussing this with a person with Down syndrome and their family, I ask whether or how it may by interfering with life. For many, it is not really interfering but at times may be considered a social issue with regards to when and where the behavior is occurring and how it might be affecting those around the individual. By distracting or redirecting the individual, it can often be suppressed. However, we might be trying to suppress what for many individuals is relaxing, pleasurable, and/or comforting. For some individuals, it may be more appropriate to redirect when and where it occurs rather than to suppress it completely.
To avoid embarrassment and a feeling of low self-esteem, we encourage discussing with the individual that the behavior is OK but that it may be distracting to others and, therefore, a different time and place may be more appropriate. The individual may feel anxious if they are unable to “release” their excitement or anxiety through the stereotypy, which may be avoided by helping them identify a more appropriate place and/or time to do the behavior. However,
if the person feels embarrassed, anxious, or upset when this is addressed, the stereotypy may increase, or the individual may develop additional stereotypies. Anxiety itself is one of the triggers for some individuals. Sometimes using stress-reducing or sensory strategies may be beneficial.
Often, individuals are not aware that they are doing the particular behavior and are unable to anticipate when the behavior is about to occur. When there is a concern regarding when and where the behavior is occurring and the individual is unaware of the activity, making the individual aware of it and redirecting them to a different time and/or location can be helpful. In social settings, to avoid causing the person to be embarrassed or self-conscious, some families have developed a subtle “secret sign” that they use to make only the individual aware of the behavior and help redirect them to a different time and place.
Stereotypies do not typically respond to medications.
Other causes of movements or vocalizations such as tics or seizures may be considered. A neurologist can help delineate the cause.
Additional information is available in the 2nd edition of our book Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges.