A parent of an individual with Down syndrome asked a question about stereotypies and self-stimulatory behavior. The parent shared that the individual made noises while watching videos on their iPad and appeared to be unaware they were making the noises. The parent also said that the individual rarely made the noises when they were not using the iPad. I have shared my response below.
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, we point out that stereotypies are common in people with Down syndrome and not something that necessarily has to be addressed. I ask whether or how it may by interfering with life. For many, it is not really interfering, and it may not need to be addressed with the individual in any way. However, at times, it 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. One approach is explaining to the other individuals in that social setting what a stereotypy is and why it may be occurring. Often, that will result in greater acceptance of the behavior.
However, sometimes the setting is less tolerant, or the behavior is significantly disruptive so that it becomes necessary to address the behavior with the individual. The behavior may result in embarrassment or a feeling of low self-esteem due to the reaction of others. If that is an issue, we discuss 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. The behavior can often be suppressed by distracting or redirecting the individual. 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 and to help them identify a different place and/or time to do the behavior.
In addition, 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 behavior and are unable to anticipate when the behavior is about to occur. As mentioned previously, if 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.
This article was adapted from a Q&A developed in partnership with LuMind IDSC Foundation. This Q&A is available for free along with other Q&As at www.myDSC.org.