We received the following question:
Have you ever seen cases in which a person with Down syndrome keeps writing in a journal all day? My loved one keeps on writing names of his favorite superheroes and other words from his favorite movies in journals over and over while talking to himself. Have you seen that before?
We have seen many people with Down syndrome at our clinic who write in a journal, copy pages of books or magazines, or do other similar activities. They may write words, coherent sentences and paragraphs, random words that may not have a “point” to someone else reading them, or letters that do not make words. Sometimes there are figures or drawings interspersed in the letters and words.
This may be a form of relaxation. Many individuals use it to process their day or manage stress. When the writing increases, it may not be a symptom of a problem but a way to try to manage the stress from a problem. The person may be trying to deal with a sense of discomfort, whether it be physical, mental, or social. Like self-talk, we do not see this behavior as being intrinsically abnormal. In fact, it can be healthy from both a mental health promotion standpoint as well as a way for the individual to help manage a mental (or physical) illness or a social stressor.
It may be a “groove.” Having a groove or grooves is common in people with Down syndrome. Many people with Down syndrome tend to do certain behaviors repetitively or with a set pattern or routine. For a variety of reasons, sometimes a groove may become problematic and even diagnosable as obsessive-compulsive disorder (OCD).
For people without Down syndrome, compulsive behaviors are typically bothersome to the individual; they do not want to do them, but they are compelled to do so, and it bothers them that they do. This is not typical in people with Down syndrome. For people with Down syndrome, the behaviors tend to become problematic because the individual gets “stuck” on the behavior to the exclusion of other activities. The person may not participate in recreational activities, go to work or school, do his self-care, sleep, or eat appropriately, etc. In that situation, a behavior like writing in a journal may have become a symptom of OCD.
A recording of a webinar on the groove and OCD can be found at this link. It outlines strategies to promote healthy grooves as well as ways to address problematic grooves.
In some situations, a behavior, such as journal writing, is a normal, common activity for the individual that has a variety of benefits such as stress reduction. It may be a beneficial groove. However, it may become problematic at some point in that it becomes excessive and prevents participation in other activities. This may be in response to a variety of illnesses, stressors, etc.
Additional resources from our Resource Library for families and caregivers of individuals with Down syndrome can be found here.
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 .