I remember my first day working with Dr. Chicoine at the Adult Down Syndrome Center. I could sense the discomfort in “Aaron” as he moved his stool away from the new face and stranger that entered the exam room. As Dr. Chicoine and mom engaged in conversation, I tried my best to make Aaron feel more comfortable; I maintained my distance, avoided excessive eye contact, and smiled as often as possible. My attention shifted to Dr. Chicoine and mom as they continued their discussion, but I couldn’t keep my focus, as Aaron started mumbling a few words. At first, I thought he was talking to me, but as I shifted my focus, it became obvious that his words were not directed toward me. “Who is this girl?” he said. “We need to be quiet so she doesn’t know we’re talking about her.” “I don’t know if I like her.” I quickly looked away and stepped out with Dr. Chicoine, later asking him if he noticed this seemingly abnormal behavior. “No, I didn’t,” he said. “I guess I’ve just gotten used to it!”
Self-talk can be defined as conversations with oneself or imaginary friends and commonly occurs among adults with Down syndrome. This is an important concept to understand as caregivers often view this behavior as abnormal when in reality up to 80% of patients seen at the Adult Down Syndrome Center engage in conversations with self or imaginary friends. More concerning is the fact that these conversations can easily be mistaken for psychotic behavior and subsequently treated with antipsychotic medication.
Research shows that people with Down syndrome tend to understand more than they are able to communicate, as speech or cognitive impairments often limit expressive communication. The inability to communicate one’s needs and concerns often results in alternative methods to cope with inner frustrations or fears. Thus, it is not uncommon for individuals with Down syndrome to use self-talk, either talking to themselves or talking to imaginary friends, as a method of coping and expressing inner sadness or frustration. In fact, many caregivers note that the level of self-talk tends to increase with the level of emotional intensity of the day.
My interaction with Aaron serves as a great example of how self-talk can be used as a method of coping during an uncomfortable situation. Recognizing Aaron’s self-talk helped me understand the anxiety-provoking nature of having a new provider in the room and gave me the insight to stay outside the room as Dr. Chicoine returned to perform the physical exam.
It is important to understand that self-talk is normal behavior in adults with Down syndrome, as it serves other important roles in their lives. As we see in children, self-talk is essential for cognitive development, as it helps with the coordination of thoughts and actions as well as the development of new skills. Interestingly, self-talk often continues into adulthoodin individuals with Down syndrome, albeit at a lesser rate, and serves a similar role as in children: to direct behavior and learn new skills. The lower rate of observed self-talk in adults with Down syndrome is linked to their increased social awareness and need to keep these conversations private. On the other hand, individuals with Down syndrome may have difficulty judging social context and the perceived appropriateness of their behavior, which is why their self-talk is so readily recognized.
In addition to serving as a method to cope with inner frustration and guide one’s thoughts and actions, self-talk also serves as a method of entertainment, especially when alone for prolonged periods of time. Self-talk in this setting often manifests itself as talking with imaginary friends. As one becomes more involved in social activities, the prevalence of this self-talk often decreases, which highlights the fact that self-talk serves as an important social outlet.
My hope in writing this is to help caregivers and parents of adults with Down syndrome better understand the concept of self-talk and the important role it serves in the daily lives of people with Down syndrome.
References
McGuire, D., Chicoine, B.A., & Greenbaum, E. (1997). “Self-talk” in adults with Down syndrome. Disability Solutions, July/August.
A webinar on self-talk presented by Dr. Brian Chicoine in November 2021 can be found at this link.