The definition of a “behavior problem” varies but certain guidelines can be helpful in determining if a behavior has become significant.

The first step in evaluation of a child/adult with Down syndrome who presents with a behavior concern is to determine if there are any acute or chronic medical problems related to the identified behavior. The following is a list of the more common medical problems that may be associated with behavior changes.

Evaluation by the primary care physician is an important component of the initial work-up for behavior problems in children or adults with Down syndrome.

The behavioral challenges seen in children with Down syndrome are usually not all that different from those seen in typically developing children. However, they may occur at a later age and last somewhat longer. For example temper tantrums are common in 2-3 year olds, for a child with Down syndrome temper tantrums may begin at 3-4. When evaluating behavior in a child with Down syndrome it is important to look at the behavior in the context of the child’s developmental age, not only their chronological age. It is also important to know the child’s receptive and expressive language skill level as many behavior problems are related to frustration with communication. Many times the behavior issues can be addressed by finding ways to help the child communicate more effectively.

The following are some of the common behavior concerns reported by parents/teachers.

• Wandering/running off—the most important thing is the safety of the child. This would include good locks and door alarms at home and a plan written into the IEP at school regarding what each person’s role is in the event the child leaves the classroom or playground. Visual supports such as a STOP sign on the door and/or siblings asking permission to go out the door can be a reminder to the child to ask permission before leaving the house.

• Stubborn/oppositional behavior—a description of the child’s behavior during a typical day at home or school can sometimes help to identify an event that may have triggered the non-compliant behavior. At times the oppositional behavior may the child’s way of communicating frustration or lack of understanding due to their communication/language problems. Children with Down syndrome become very good at distracting parents or teachers when they are challenged with a difficult task.

• Attention problems—children with Down syndrome can have ADHD but they should be evaluated for attention span and impulsivity based on developmental age and not strictly chronological age. The use of parent and teacher rating scales such as the Vanderbilt and the Connors Parent and Teacher Rating Scales can be helpful in diagnosis. Anxiety disorders, language processing problems and hearing loss can also present as problems with attention.

• Obsessive/compulsive behaviors—these can be as simple as always wanting the same chair at the table to repetitive behaviors such as dangling beads or belts when not engaged directly in an activity. This type of behavior is seen more commonly in younger children with Down syndrome and while the number of compulsive behaviors is no different than those in typical children at the same mental age the frequency and intensity of the behavior is often more in children with Down syndrome.

• Autism Spectrum Disorder—autism is seen in approximately 5-7% of children with Down syndrome. The diagnosis is usually made at a later age (6-8 years of age) then in the general population and regression of language skills if present also occurs later (3-4 years of age). The interventions strategies are the same as for any child with autism and it is important for the child to be identified as early as possible so he/she can receive the most appropriate therapeutic and educational services.

Intervention strategies for treatment of behavior problems are variable and dependent on the child’s age, severity of the problem and the setting in which the behavior is most commonly seen. Local parent support programs can often help by providing suggestions, support and information about community treatment programs. Psychosocial services in the primary care physician’s office can be used for consultative care regarding behavior issues. Chronic problems warrant referral to a behavioral specialist experienced in working with children and adults with special needs.

Attention deficit hyperactivity disorder, or ADHD, is a commonly diagnosed childhood problem. ADHD is characterized by consistent demonstration of the following traits: decreased attention span, impulsive behavior, and excessive fidgeting or other nondirected motor activity.

All children, including children with Down syndrome, display these traits from time to time. But the child with Down syndrome may exhibit these traits more often than other children his age.

Does that mean that your child has ADHD? It may, but more often it means that a medical problem needs to be addressed, or that your child's educational program or communication method needs some adjustment. In children with Down syndrome who have difficulty paying attention, ADHD is a diagnosis of exclusion. Other problems must be ruled out first. What follows is a discussion of those problems.

Hearing and Vision Problems
In order for a child to pay attention to classroom material, she has to be able to hear and to see it. Both hearing and visual problems are common in children with Down syndrome. Ear infections are overwhelmingly common and, even if treated, can cause hearing loss for weeks. People with Down syndrome have middle ear structural abnormalities that can cause lifetime mild to moderate hearing loss.

Both near- and far-sightedness are common in Down syndrome, as well as cataracts and "lazy eye."

How can we rule out significant hearing and/or visual loss as a cause of attentional problems? To monitor hearing, an auditory brainstem response test (ABR) or otoacoustic emission (OAE) should be performed early in the child's life--by 3 months of age at the latest--as a baseline. Hearing screens should be performed annually until three years of age, and every other year thereafter. Children with abnormal hearing evaluations should be seen by an ear-nose-throat physician (otolaryngologist) to manage treatable causes of hearing loss.

A child with Down syndrome should be evaluated by an eye doctor during the first year of her life, and yearly thereafter. Some children may need more frequent followup depending on their visual diagnosis.

Gastrointestinal Problems
People with Down syndrome are at increased risk for an intestinal condition called celiac disease, which is a condition in which the body cannot process a protein found in wheat and certain other grains. While typical symptoms of celiac disease include loose stools, diarrhea, and poor weight gain, the condition often presents only with subtle effects on energy and behavior. People with Down syndrome are also predisposed to significant constipation, which when severe can cause abdominal pain, lack of appetite, and restlessness.

Current recommendations for gastrointestinal monitoring include screening for celiac disease between 2 and 3 years of age. This screening should include measurement of IgA antiendomysium antibodies, as well as total IgA. Your child's primary care provider will want to review your child's bowel status with you at each visit as well.

Thyroid Problems
About 30 percent of people with Down syndrome have thyroid disease at some point in life. Most have hypothyroidism, or underactive thyroid gland; a few have disease that results in overactive thyroid gland (Graves'disease). An underactive thyroid gland can, among other things, make a child very tired and apathetic.

Too much thyroid activity can cause agitation and restlessness. Therefore, both conditions can look like poor attention and behavior.

Because thyroid disease is so prevalent in this population, and because it is difficult for doctors to detect just by examining your child, an annual blood test for thyroid hormone is recommended by the Down Syndrome Preventive Checklist.

Sleep Problems
Sleep disorders are extremely common in Down syndrome. These disorders are a group of conditions with many different causes but one thing in common: they all interfere with getting a good night's sleep. As a parent, you know that tired children can behave very differently from tired adults: they can become restless, whiny, and difficult to calm. And people of all ages have difficulty focusing and learning new information when they are sleep deprived.

Which sleep disorders are common in people with Down syndrome? Sleep apnea, or short periods of not breathing during sleep, is especially common. People with Down syndrome have small, often "floppy" airways, which can sometimes be completely or partially blocked during sleep by large tonsils and adenoids, or by the floppy walls of the airway collapsing as air is exhaled. Regardless of the cause of obstruction, the sleeper must awaken briefly to resume breathing. Some patients with sleep apnea awaken hundreds of times per night.

Symptoms associated with but not specific to sleep apnea include snoring, lots of "thrashing" while asleep, excessive daytime sleepiness, mouth breathing, and unusual sleep positions such as sleeping in a seated or hunched forward position.

Children suspected of having a sleep disorder should undergo a sleep study evaluation at an accredited sleep center.

People with Down syndrome may have many barriers to effective communication. The receptive language skills of children with Down syndrome--how well they understand what is being said--are often much stronger than their expressive language skills--how well they can say it. Parents often comment, "He knows what he wants to tell us, he just can't seem to put the words together or we can't make out what he is saying." Classroom participation is thus more difficult as well. The child may express his frustration by acting out or by inattention.

Children with Down syndrome have a wide range of learning styles. Your child's educational team may need to try more than one method of presenting material before finding the one that works best for your child. If material is presented in a way that is not compatible with a child's learning style--for example, oral lectures for a student who needs visual aids and prompts--that child may appear bored, fidgety, and hyperactive.

The level of the material may also be a problem. If a child is presented with concepts that are too difficult for his cognitive level, he might "tune out" and appear inattentive. A child who is bored with overly easy material also may attend poorly and act out.

Because of the communication problems discussed above, people with Down syndrome may have difficulty talking about things that make them sad or angry. Major life changes such as loss or separation may prompt decreases in appropriate behavior at school or work.

ADHD and Down Syndrome

The frequency of ADHD in children with DS is not known with certainty. However, ADHD like symptoms are more common in young children with Down syndrome compared to children from the general population. Compounding symptoms such as stereotypy (repetitiveness), anxiety or extreme irritability in the presence of ADHD-like symptoms may indicate another disorder such as autism, bipolar disorder or obsessive compulsive disorder.

Uncomplicated ADHD is common in the youngest children with Down syndrome. However many school age children with ADHD frequently have other behavioral conditions including oppositional defiant disorder, disruptive behavior disorder or obsessive compulsive traits.

Next Steps

If you are concerned about decreased attention span, impulsive behavior, and excessive fidgeting or other non-directed motor activity in your child, it is appropriate to consult your pediatrician, a developmental and behavioral pediatrician or child psychiatrist.

    

    

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