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Mental Health and Down Syndrome

A Q&A with Dr. Susan Fawcett

Reprinted from 3.21: Canada's Down Syndrome Magazine (Issue #9: The Mental Health Issue). Click here to download the full magazine.

DISCLAIMER: Some of the questions we received were very specific to a particular person. Given that Susan has not had the opportunity assess these individuals, she will provide only general information and guidance in this article. Please consult your local mental health professional for more individualized assistance.

What is the most common mental health issue among children and adults with Down syndrome? 

The most common issues differ depending on the age of the person. In children, dual diagnoses of attention deficit or other behavioural disorders are most common. In adolescents and adults, depression is more frequent. Obsessive compulsive disorder (OCD) and anxiety occur across the lifespan, but the type of anxiety tends to differ. For example, specific phobias (such as being fearful of dogs or needles) are common at all ages, but social phobias and generalized anxiety disorder are not typically diagnosed until teen or adult years.

Do symptoms of mental illness present differently in people with Down syndrome individuals versus individuals without Down syndrome?

Symptoms do indeed present differently! One contributing factor to this is that people with Down syndrome have difficulty with expressive language, so symptoms such as obsessive thoughts or feelings of worthlessness tend to be difficult to notice or assess. Another contributing factor is the inherent overlap between symptoms of Down syndrome and those associated with mental health issues. For example, people with Down syndrome have a strong preference for sameness, and routine. This makes it more difficult to tell when a person has crossed the line into the pronounced rigidity that is associated with OCD.

What are the symptoms of depression, anxiety, OCD, and ADHD?

Before outlining symptoms, it is important to encourage caregivers to first thoroughly investigate potential medical causes of any changes in behaviour. In light of the previous question, I have included mainly symptoms here that tend to appear most often in people with Down syndrome.

Depression: decreased or lost interest in previously enjoyed activities (this may result in the person refusing to leave the house more often); irritability; changes in sleep or eating patterns, extra slow movement and reduced ability to transition from one activity to another; increased crying or appearing to be down or sad

Anxiety: avoidance of certain tasks or activities; increase in problem behaviour, especially if associated with non-preferred activities; irritability; restlessness; decrease in sleep; expressing worry about upcoming events (may manifest as repeating the same question frequently)

Obsessive-Compulsive Disorder (OCD): insistence on sameness; engagement in lengthy routines that follow the same order each time, coupled with becoming agitated if the routine is interrupted; hoarding, checking, or counting behaviours

Note: While typically-developing people with OCD tend to be very bothered by their obsessions and compulsions, this may not be the case for all people with Down syndrome (but often their families are bothered by the symptoms).

Attention Deficit Disorder (ADD) and Attention Deficit/Hyperactivity Disorder (ADHD): inability to sit still or seeming to move constantly; great difficulty concentrating (even on very short activities); high degree of distractibility; lack of impulse control, which may result in problem behaviours that seem to come out of nowhere, such as throwing objects or running away

Note: The overlap between ADD/ADHD and Down syndrome is pronounced! Think about whether your child is exhibiting these symptoms more frequently or intensely than other children with Down syndrome you have seen.

Are there any ways to prevent metal health issues from arising? 

Yes – I’m so glad you asked! Prevention or early intervention is always the way to go, if possible. Having said this, a family history or a traumatic event are frequent contributors to the development of mental health issues, and these are tough, if not impossible, to prevent.

There are plenty of things that parents can do to support behavioural and mental health! From an early age, parents can promote the following domains: activity, agency, flexibility, variability, reality, sociability and self-esteem.

  • Activity: The role of regular exercise in supporting good mental health is well-documented. Build it in whenever possible!
  • Agency: We want people with Down syndrome to be empowered to act as causal agents in their lives. You can help develop this by offering choices within daily routines, and teaching independence in daily living skills. If adults help children too much, a phenomenon called learned helplessness may develop, essentially meaning that a person learns they don’t have control over their own lives. Not surprisingly, this can lead to depression.
  • Flexibility: Routines can be really helpful and comforting for people with Down syndrome, but parents need to watch out for excessive adherence to routines or general rigidity. Try to introduce some new elements on a regular basis to allow them to learn how to be flexible and adaptable. Whenever your child with Down syndrome “goes with the flow,” reward them with plenty of social praise.
  • Variability: Encourage your child to have a variety of interests, e.g., foods, sports, TV shows, favourite characters.
  • Reality: Keep your child with Down syndrome grounded in it. Emphasize real social interactions. Try to limit too much time on screens, especially watching the same thing repetitively, or watching highly dramatic/violent shows. Make sure your child doesn’t spend too much time interacting with imaginary friends and characters or reciting movie scripts; redirect them to real-life activities often. This is particularly important during the current pandemic, as people with Down syndrome may be feeling bored due to a combination of too much time at home and not enough extracurricular activities.
  • Sociability: Encourage social interactions as much as possible. Be sure to include other peers with developmental disabilities in the child’s social circle. Remember that, eventually, this will likely be their peer group, moreso than peers who are typically-developing.
  • Self-esteem: Give your child a tonne of praise and encouragement – more than you think they need! Celebrate all successes with them, even the small ones. Ensure they participate regularly in activities during which they have a chance to experience mastery, i.e., activities they are good at.

What does treatment look like if you’re diagnosed with a mental health issue? 

There are two major categories of treatment: pharmaceutical and psychological therapy or counselling. People with Down syndrome can benefit from either of these, or even better – both together! Medications work well for people with Down syndrome in the treatment of mental health issues, though a psychiatrist may take a very cautious approach, e.g., starting with a very low dose when trialling a new medication.

Traditional “talk therapy” may not seem like a good fit for people who have trouble expressing themselves via talking. But if a psychologist or counsellor uses a more structured approach, such as Cognitive Behaviour Therapy (CBT), this can work well for people with Down syndrome. This therapy includes modifying or learning new behaviours, learning what diagnostic categories such as “anxiety” and “OCD” are, learning to identify and express emotions, and changing unhelpful patterns of thought. It will be important to find a therapist who has experience modifying a CBT approach with people who have intellectual disabilities.

My daughter was in a bus crash a few years ago. She has been dealing with trauma, PTSD, nightmares, and OCD ever since. She has tools and strategies but she has changed. She is no longer independent, her problem solving skills have dramatically decreased, and she is fearful of the world – she no longer feels safe. How do I help my daughter feel safe again?

This sounds really stressful for your daughter, not to mention the rest of the family. It is possible that post-traumatic stress disorder, or PTSD, may take longer to resolve in individuals with Down syndrome. In people with Down syndrome, it is more common for a traumatic experience to cause OCD, anxiety, or PTSD. Further, it has been suggested that individuals with Down syndrome may experience all sorts of memories, perhaps particularly traumatic ones, as if they are happening in the present moment. This is due to relatively strong visual memory skills.

A traumatic event like a serious accident can have very long-lasting consequences on a person’s mental health. In addition, the regression in skills that may come following the traumatic event can be very hard on parents, who are used to a certain level of independence. Meeting your daughter where she is currently at and helping her slowly rebuild her skills from there, rather than focusing on what she can no longer do, may be helpful here for all of you. It can also be overwhelming to think about the many problems that may have developed since the traumatic event. With this in mind, try choosing one skill that would improve the quality of life for her and the family if she were to get it back. Enlist the help of an occupational therapist to help you break down the task into small chunks in order to help her rebuild her independence, one skill area at a time.

**If this issue is long-standing and affects your child’s daily life, I strongly recommend individualized help from a mental health professional.

Our daughter is afraid of falling asleep and having nightmares, so she is sleep deprived. We have tried everything from mindfulness, music, aromatherapy, etc. but they don’t stop the nightmares. How can we help her get a good night’s sleep?

I am sorry to hear that sleep is so hard for your daughter! Nightmares or night terrors are a sleep disorder, and many sleep disorders are more common in Down syndrome.

It sounds like you have tried relaxation strategies and ways to make bedtime more pleasant, which are great ideas, but you may need an extra layer. She may need more understanding around what nightmares are, for example. A social story about nightmares that you can read together may be helpful, so that she understands that they are not real (even though they feel that way). You can include a discussion here about the difference between reality and pretend/not real.

Was there something that originally caused the nightmares? Is she able to talk about it with you, even in a limited way or with visual support? If so, this may help her work through the underlying issue. Note, though, that many night terrors are not caused by anything specific, but rather represent non-specific stress. You have the relaxation strategies already, now make sure you also have time built in before bed for emotional strategies such as comfort, cuddles, and reassurance.

Lastly, sleep deprivation will cause her anxiety to worsen. Is there a way to build in a short nap or rest period over the course of the day? While not a long-term solution for inadequate sleep during the night, a short period of daytime sleep may accomplish two things: much-needed rest, and the potential for her to “practice” sleeping in a safe environment with people who are comfortable and familiar right there with her. She will then experience sleep without nightmares, which may lessen her anxiety over time (nightmares typically happen in the early morning hours, long after someone first goes to sleep).

How do we help our children who have developed major medical trauma because of the things they have had to endure medically, whether it’s being held down for a procedure/blood test, violating their sense of privacy by making them expose parts of their bodies to doctors, or having to stay in a hospital for an extended time (which involves a lot of unpleasant pokes and prods at the least)? Our daughter doesn’t even like the word doctor and shudders just driving past the hospital. She has to be sedated now just to take blood. How do we help her heal from the trauma, and support her for future procedures?

Because children with Down syndrome often have medical complexities, they are often no stranger to medical settings such as hospitals. It sounds like your daughter has endured a lot! She has developed a strong fear response to places, people, or words even loosely associated with the frightening experiences. This means that no matter which treatment you opt for, you will have to move slowly and carefully.

Thankfully, a set of approaches called exposure therapy can be very helpful with medical fears (or specific phobias of any kind). This therapy involves very gradually exposing a person to the fearful object or situation. Clinically, I have used this to help teens with Down syndrome overcome a fear of needles, for example. We begin by building a fear ladder, with less scary needle experiences on the bottom and the most scary ones on the top. We may start by looking at photos of needles, then watching videos of someone having a blood test, then look at and touch a real needle, then visit the lab where the teen will get the needle, working up to the final experience on the ladder –actually getting the blood test (or these days, the vaccine!). The Anxiety Canada website has great resources for exposure therapy. The Child Life program at BC Children’s Hospital also has structured systematic desensitization (a type of exposure therapy) programs for children with developmental disabilities who have anxiety around medical and dental procedures.

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