Mental Health & Down Syndrome

If you live in an area with a Down syndrome clinic, that is a great place to start. However, many families live in areas without a clinic or mental health professionals specifically skilled in working with individuals with Down syndrome. If this is the case, there are still ways to find the best professionals for your loved one. Remember that you may want to create a team of clinicians and professionals possibly including your primary care physician, a psychologist/social worker/counselor, a teacher or job coach, and a psychiatrist or neurologist. 

When building your team, look for providers who have experience working with developmental disorders. You can ask your primary care provider or someone from your medical insurance company for a list of providers who have an interest in evaluating individuals with developmental disorders. If you have access to the internet, visit the website of your medical insurance provider and search for professionals near you who have expertise in developmental disorders. You may consider asking your case coordinator about services available in your area. Contacting a local Down syndrome parent group can be helpful as well, as many parents are willing to share their experiences with local medical professionals. 

In locations without access to Down syndrome-specific services, families might contact their state’s University Center of Excellence in Developmental Disabilities (UCEDD). Many of these programs are located in hospitals with multiple services including mental health professionals (psychiatrists, psychologists, social workers) as well as developmental-behavioral pediatricians. The UCEDD programs can provide advice regarding referral to adult services in the community and help locate mental health providers who have expertise in working with individuals with Down syndrome. 

Scheduling a consultation visit to meet a new doctor or clinician to see if it is a good match can be beneficial. This introductory visit increases the comfort of the individual with Down syndrome with both the place and provider. It may also help you to get an appointment quickly if a future crisis arises. Waitlists for initial appointments are common and can be very long. 

There are several tests needed to rule out medical conditions that can cause children and adults with Down syndrome to display a “behavioral problem.” The testing needed will vary from one person to another. You and your doctor might consider the following: 

• Blood testing for things like thyroid function and anemia (not having enough healthy red blood cells)
• Sleep-related testing with a sleep disorders clinic to rule out issues like sleep apnea
• Testing for gastrointestinal difficulties including constipation, celiac disease, reflux, and food sensitivities 
• Routine vision and hearing screenings at least every 2 years
• Thorough dental exam with x-rays (if needed)
• Physical exam and interview with the individual and their caregiver for pain
• Neurological exam (followed by x-ray, CT scan, or MRI if suggested)
• Urinalysis and culture to identify urinary tract problems
• A close look at current medications and their potential side effects

As you and your doctor are addressing any medical concerns, it is important to remember: 

• Children and adults who have multiple medical problems, significant difficulty communicating, or impaired hearing or vision tend to experience higher rates of mental health problems (McGuire & Chicoine, 2021).
• Emotional and behavioral problems in individuals with Down syndrome are not always due to an underlying physical medical condition. Nevertheless, these medical conditions need to be ruled out as part of a comprehensive approach.
• Physical medical conditions, even if they do not directly cause the mental health issue, could still worsen it or make the individual with Down syndrome more resistant to treatment of it.
• Treating only the medical condition, like hypothyroidism, may not remove the mental health condition. The opposite is also true; for example, a child or adult with hypothyroidism plus depression is unlikely to respond to treatment of depression with antidepressant medication alone unless the hypothyroidism is also corrected. Because emotional, behavioral, and physical issues are all linked, they need to be treated at the same time.

Generalized Anxiety 

Generalized anxiety can appear as a long-term increased level of anxiety as well as repeated, ongoing short bursts of anxiety in response to certain situations. Situational anxiety often appears during transitions, for example, changing locations or activities, as well as during new situations with uncertain expectations. Having brief periods of anxiety due to difficult situations is normal and happens to everyone. To be an anxiety disorder, symptoms must last 6 months or more and symptoms occur on most days. Symptoms of anxiety vary widely, but they include: 

• Heart pounding
• Shortness of breath
• Upset stomach
• Pacing
• Tense muscles
• Trouble sleeping
• Irritability 
• Trouble sleeping
• Difficulty concentrating
• Nail-biting or picking at skin
• Rubbing or wringing hands
• Worry
• Facial grimaces

One form of anxiety disorder is agoraphobia which is the fear of being in certain places or situations. It is most associated with the fear of leaving home. It can occur because of a negative event that causes the person to fear visiting the same location or having the same event occur again. The fear can be very intense for the person experiencing it. Individuals with Down syndrome have strong visual memories which may contribute to them being more likely to replay memories in their minds repeatedly. 

Treatment for anxiety disorders may involve therapy as well as medication. In therapy, the person may work to identify the situations or locations that cause them fear. Once these have been identified, individuals may need to be reassured they will not be put in the situation or taken to the location again. If the triggering situation or location is one they will have to be a part of again, desensitization may help. Desensitization works to gradually reduce a person’s fear by taking very small steps to tolerate the trigger. This requires patience from loved ones as the process can be time-consuming. 

If a caregiver anticipates a significant change is coming, such as a loved one receiving a terminal diagnosis, a change in living environment, or a family member planning to move away, beginning counseling prior to the change is one way to decrease the amount of stress that will occur. 

Anxiety vs ADHD in Children 

Unlike in children with Down syndrome with impulsive or oppositional behavior and attention difficulties, the restlessness, fidgeting, and compulsiveness associated with generalized anxiety has clear start and end points. A detailed history should be taken to identify the source or triggers leading to the anxiety. A professional assessment of antecedents (triggers), behaviors, and consequences (ABCs) followed by the development of a behavioral modification and management plan is helpful. Antidepressants or anti-anxiety medications may help but should be reserved for more persistent and serious symptoms and always used with the close supervision of a medical professional. 

It is not uncommon for children and adults with Down syndrome to require extra time to process information and have difficulty maintaining attention on tasks. In children with greater cognitive and language deficits, especially in younger age groups, the difficulties in attention are often seen with impulsive and hyperactive behaviors. This pattern of inattention, impulsivity, and hyperactivity is consistent with a diagnosis of attention deficit hyperactivity disorder (ADHD). For this reason, many children with these behaviors are given stimulant medications, which are used to treat ADHD. 

The response of individuals with Down syndrome to stimulant medications has not produced encouraging results. In a small but significant portion of children and adults with Down syndrome, these medications cause a negative behavior response. The most commonly seen negative effects include irritability, agitation, aggressive behaviors, anxiety, and sleep-related problems. Parents and caregivers should be warned about these negative side effects since they can occur very soon after starting the medication and can be troubling to see. A small number of children with ADHD symptoms may benefit from stimulant medications, but even they may experience an increase in anxiety and obsessive-compulsive symptoms. For this reason, treatment of ADHD symptoms should include a focus on behavioral and therapeutic strategies to improve functioning and performance at home and in the classroom. However, for children with severe impulsivity and disruptive behaviors, the use of medication may be helpful. 

Depression 

Depression is one of the most common mental health diagnoses seen in individuals with Down syndrome (McGuire & Chicoine, 2021).  

Common symptoms of depression for children and adults with Down syndrome include: 

• Extreme social withdrawal
• Consistently sad and/or agitated mood
• Inability to enjoy activities 
• Unusual sleep patterns such as a dramatic increase or decrease in the amount of sleep
• Decreased concentration
• Weight loss or gain
• Recurrent thoughts of death
• Reluctance to leave home
• Increased self-talk or negative tone during self-talk

The symptoms must cause distress and impact functioning in social, occupational, or other areas of life. Just like everyone else, the causes of depression in individuals with Down syndrome can be social and environmental stress, physical differences or changes within the brain, or medical problems. 

Individuals with Down syndrome are especially sensitive to changes in their environment which they often perceive negatively. These may include previously unknown medical illnesses, pain, or psychosocial stressors (like an older sibling moving to college, sudden illness in a family member, death of a pet, or absence of a teacher). These ordinary events can seem extraordinary for individuals with Down syndrome and come with a much larger negative impact compared to a neurotypical person under similar circumstances. 

Diagnosis of depression can be made by a doctor after ruling out alternative causes and thoroughly interviewing the individual and their family or loved ones. Treatment for depression typically consists of counseling, reducing stress, medication, and/or encouraging participation in affirming activities and exercise. Treating depression with medication might fail without other support. Combining medication with counseling and other strategies may be more effective than medication alone (McGuire & Chicoine, 2021).  

Obsessive-Compulsive Disorder 

An increased level of restlessness and worry may lead the individual with Down syndrome to behave in a rigid manner. Some caregivers report their loved one being “stuck” in a certain behavior or routine. The child or adult might feel the need to follow familiar patterns in these situations. They may engage in repetitive, compulsive, or ritualistic behaviors often seen with obsessive-compulsive disorder (OCD). The two disorders – generalized anxiety and obsessive-compulsive disorder – may occur together. The problems can be challenging for parents or caregivers to navigate, as the individual with Down syndrome and generalized anxiety or obsessive-compulsive disorder may struggle to complete important activities of daily living.  

Bipolar Disorder 

Bipolar disorder causes people to move between manic (includes euphoria, agitation, sleeplessness, hyperactivity, and self-destructive behavior) and depressed states. In typically developing individuals, these cycles typically occur over weeks or even months. However, in individuals with Down syndrome, the cycles tend to occur much quicker over the course of hours or days. When in a depressed state, individuals with Down syndrome are less likely to verbalize their feelings, but they do often show symptoms such as an irritable mood, withdrawal, and loss of interest in activities. When individuals with Down syndrome experience mania, they may seem overstimulated, agitated, restless, angry, or hyperactive. 

Keeping a symptoms journal with your loved one can help track moods over time. This can assist a doctor with making an appropriate diagnosis. Once diagnosed, there are a number of medications that can be used to stabilize the mood. Counseling is beneficial for not only the individual but their loved ones as well. Bipolar disorder can be a stressful experience for everyone involved, and individuals may not understand why they are having so much trouble controlling their behavior. Education about the disorder along with coping strategies can ease the fear and guilt that might accompany the diagnosis. 

Bipolar disorder is a chronic condition that will require monitoring throughout the lifetime. After diagnosis, finding the right medication to treat the disorder is the first step. Taking the medication consistently as prescribed is vital to controlling the symptoms. The medication should not be stopped without a doctor’s order. 

Chronic Sleep Difficulties 

Children and adults with Down syndrome commonly experience a range of sleep-related difficulties either as a primary sleep disorder or associated with mental health problems (e.g., generalized anxiety and mood disturbances). Regardless of the cause, sleep difficulties decrease the ability to maintain alertness, attention, and emotional control during the day. Chronic sleep difficulties in individuals with Down syndrome should be evaluated thoroughly. 

Children and adults with Down syndrome are at increased risk for sleep apnea which causes mild to severe pauses in breathing during sleep that leads to having too little oxygen in the blood. It is necessary to conduct tests at a sleep study laboratory to confirm this diagnosis. More information about sleep apnea can be found on our resources tab.

Environmental Triggers 

Children and adults with Down syndrome are often very sensitive to events happening in their life and in the world around them. Triggers might include bullying, an argument with a friend, or a family member’s divorce. Illness or loss of loved ones is particularly devastating and almost always leads to a grief reaction during which they may seem less able to think, reason, remember, process, and learn information. Upsetting local, national, or world events such as war, crime, or natural disasters might also lead to temporary generalized anxiety, obsessive-compulsive symptoms, depression, and sleep difficulties. Individuals may experience weight loss, less independence in self-care, or decreased desire to attend school or work. However, if the situation doesn’t improve and there is no attempt to help the person with counseling, medications, or behavioral interventions, the mental state could become a long-term decline in overall functioning.  

Oppositional Defiant Disorder 

Sometimes, some individuals with Down syndrome may have inappropriate and negative behaviors. Many respond well to structure and behavioral interventions. In some scenarios, the individual might become increasingly oppositional and unable to follow directions. This might look like the person sitting or lying down and refusing to get up without concern about consequences. It most often occurs at meals, baths, and bedtimes or during transitions. Oppositional behaviors occur in individuals with all levels of cognitive and language skills but can be more difficult to manage in those with greater communication difficulties. In the classroom, behavioral management plans and a one-on-one aide may help to enable learning. Oppositional behavioral problems are more often seen in children with increased levels of impulsivity and hyperactivity.