Common Concerns
Mental health and wellness looks different for everyone, but individuals with Down syndrome display certain characteristics that could be concerning in the neurotypical population but are more on a spectrum for individuals with Down syndrome. This page discusses some of the most common concerns you may have and discusses what is considered healthy and when there may be cause for concern.
When To Seek Additional Support
Family members and individuals themselves are often the experts on the mental health and wellness of individuals with Down syndrome. While there is no set list of occurrences that mean someone may need to seek professional help, the general rule of thumb is sudden changes that are negatively affecting a person or their family's ability to live their daily life or have a good quality of life can indicate shifts to mental health and wellness.
If the problems persist beyond a temporary issue (someone having a couple of bad days), professional help may be able to help pinpoint causes and make a diagnosis if one needs to be made. Start with investigating possible physical causes then move onto mental health causes.
Self-Talk
First and foremost, self-talk is generally considered to not only be developmentally appropriate for individuals with Down syndrome, it can also be a useful tool. While many people use an internal monologue, people with Down syndrome use their self-talk to process stresses of the day, work through overwhelming emotions, and solve problems. As such, it is important to allow time and space for this self-talk to occur. Many people with Down syndrome to not realize when they self-talk and may become agitated when someone responds to the speech as they view it as something they are experiencing in private. Because of this agitation and the discomfort that self-talk may cause others in public, it can be helpful to discuss when and where self-talk is appropriate and where it may not be. Self-talk may offer insights into how someone is feeling, so listening carefully (without violating a person's privacy) may provide guidance on the emotional state of a person.
The two key terms to remember about self-talk are frequency and content. If the individual typically only self-talks in the privacy of the bedroom or quiet places then begins to self-talk with notably more frequency or in places they previously recognized as inappropriate, it can be indicative of shifts to mental health and wellness. Similarly, if the self-talk becomes consistently aggressive, self-deprecatory, or negative, it can be indicative that the individual is struggling with shift to their mental health and wellness
The Groove
The Groove was a phrase coined by Dr. Brian Chicoine to describe the tendency towards sameness and routine seen in individuals with Down syndrome. Not knowing what to expect can incur anxiety, so maintaining a strict routine mitigates the risk of unexpected happenings. Additionally, a routine allows activities to be completed more automatically, requiring less conscious thought. When fully utilized, the Groove helps provide a sense of comfort and independence as individuals with Down syndrome become practiced in these routines and know what to expect out of their daily routine. The routines established as part of a person's Groove are usually followed closely, but they may be able to be adjusted at times due to preferred activities or explanations of what is happening instead and why. If you're making a choice to do something different from the usual routines, be prepared to answer questions about the change to lessen anxieties about the unknown.
The routines within the Groove can become so rigid that it begins to look similar to OCD and can severely disrupt the daily functioning of the individual and those they live and work with, which is where difficulties often arise. Because shifts to the Groove often happen naturally, the recommendation is to allow individuals with Down syndrome to partake in their Groove unless it can cause harm to themselves or others or it seriously affects their or their family’s ability to function in daily life. Sudden, sharp changes to the Groove or noted refusal to deviate for any reason can indicate shifts to mental health and wellness strictly controlling routines helps provide a sense of control on expectability.
Behavioral Changes
One of the most notable characteristics of a shift in mental health and wellness in individuals with Down syndrome is changes to behavior, often leading to them being labeled as having difficult or challenging behaviors. The changes to behavior can present as difficult or challenging behaviors or can be a regression of skills previously displayed with consistency. There are many reasons for shifts in behaviors, so, if caregivers or healthcare professionals have concerns, possible physical health causes should be explored before exploring mental health causes as many physical concerns like thyroid problems, sleep apnea, and GI difficulties can cause mental health like symptoms. The behavior shifts look different in every person, and it is often up to family members to notice and report the changes to healthcare professionals.
Everyone has bad days or days when lack of sleep, hormones, negative events, or high stress, but the concerns with behavioral changes occur when the shift to behavior occurs over a longer period of time and/or is in sharp contrast to previous skills or behaviors. Challenging behaviors are rarely to try and be challenging and often serve as a form of communication. By identifying the trigger to the behavior and addressing that trigger, caregivers and healthcare professionals can begin to attempt to mitigate the difficulties the individual is experiencing. Changing behaviors are a part of getting older, so some behaviors may be a result of this aging. Distinguishing between behaviors that are annoyances and which behaviors are causing significant distress or disruption to the individual or others around them can help to determine when a behavior should be addressed.
Sensory and Regulation Challenges
Individuals with Down syndrome are often more rigid in these preferences to the point that they interfere with daily life, and disruptions to sensory preferences can lead to agitation, anxiety, and behaviors viewed as challenging. These sensory preferences can be different for each sense, and an individual’s flexibility in these preferences can shift on a seemingly daily basis. Strict rigidity in preferences and quickness to become dysregulated, especially if it’s atypical for the individual, can be indicative of shifts to mental health and wellness. If these shifts affect a person’s ability to function in daily life, professional help can help to address concerns and mitigate difficulties.
OTs can offer valuable insights for sensory regulation by offering a sensory diet with feasible shifts to the environment and lifestyle catered to the individual to make regulation more manageable for them. Sensory regulation and preferences look different for everyone, but disturbance to daily life can indicate the need for tools to assist in regulation.
For more information and resources on sensory and regulation, click here or navigate to the Sensory & Regulation page at the top of this page.
1. Chicoine, B., (Adult Down Syndrome Center). (2021a). Addressing common health conditions in adults with Down syndrome [webinar]. https://www.youtube.com/watch?v=XFHxiWm4Rus
2. Chicoine, B., (Adult Down Syndrome Center). (2021b). Self talk in people with Down syndrome [webinar]. https://www.youtube.com/watch?v=ZuQ3CcZ8p6o
3. Chicoine, B. & Frank, K. (Adult Down Syndrome Center). (2021). Mental health causes for behavior change during pandemic [webinar]. https://adscresources.advocatehealth.com/mental-health-causes-for-behavior-change-during-a-pandemic-webinar-recording-3282021/
4. Ersoy, S., Güler, H., & Çetin, F. (2018). Psychopathology in Down Syndrome. In S. Dey (Ed.), Advances in research on down syndrome (pp. 17–30). IntechOpen.
5. Esbensen, A., & Vellody, K., (Expert and Host). (2020). Depression, anxiety, and OCD in Down syndrome [audio podcast episode]. In Down Syndrome Center Podcast. https://downsyndromecenter.libsyn.com/
6. Frank, K., (Adult Down Syndrome Center). (2022). Sensory processing strategies to promote mental wellness in people with Down syndrome [webinar]. https://www.youtube.com/watch?v=QOb82XjQxF0
7. Frank, K., & Vellody, K., (Expert and Host). (2021). Sensory processing in Ds [audio podcast episode]. In Down Syndrome Center Podcast. https://downsyndromecenter.libsyn.com/
8. McGuire, D., & Chicoine, B. (2021). Mental wellness in adults with Down Syndrome: A guide to emotional and behavioral strengths and challenges (2nd ed.). Woodbine House.
9. McGuire, D., & Vellody, K., (Expert and Host). (2021). Self talk, the groove, and other common behaviors in Ds [audio podcast episode]. In Down Syndrome Center Podcast. https://downsyndromecenter.libsyn.com/