Behavioral Challenges in Persons with Down Syndrome
By Bonnie Patterson, M.D.
From the National Down Syndrome Society
The definition of a “behavior problem” varies but certain guidelines can be helpful in determining if a behavior has become significant.
- Does the behavior interfere with development and learning?
- Are the behaviors disruptive to the family/school/work place?
- Is the behavior harmful to the child/adult or others?
- Is the behavior discrepant from what might be typically displayed by someone of comparable developmental age?
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.
- Vision or hearing deficits
- Thyroid function
- Celiac disease
- Sleep apnea
- Anemia
- Gastro esophageal reflux
- Constipation
- Depression
- Anxiety
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.
How should parents approach behavior issues in their child with Down syndrome?
- Rule out a medical problem that could be related to the behavior.
- Consider emotional stresses at home/school/work that may impact behavior.
- Work with a professional (psychologist, behavioral pediatrician, counselor) to develop a behavior treatment plan using the ABC’s of behavior. (Antecedent, Behavior, Consequence of the behavior)
- Medication may be indicated in particular cases such as ADHD and autism.
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.
