What Are Some Behavioral Challenges Typical In Persons with Down Syndrome?
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 or workplace?
- Is the behavior harmful to the child or adult with Down syndrome or to others?
- Is the behavior different from what might be typically displayed by someone of comparable developmental age?
The first step in evaluation of a child or 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
- Gastro esophageal reflux
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 or adult with Down syndrome it is important to look at the behavior in the context of the individual's developmental age, not only their chronological age. It is also important to know the individual'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 person with Down syndrome communicate more effectively.
What Are Some of the Common Behavior Concerns?
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 or adult with Down syndrome to ask permission before leaving the house.
A description of the child or adult'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 individual'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.
Individuals 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.
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. Increased level of restlessness and worry may lead the child or adult to behave in a very rigid manner.
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 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 or 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.
NDSS thanks special guest author Bonnie Patterson, MD for preparing this piece.
- Association for Positive Behavior Support
An international organization dedicated to improving the support of individuals in order to reduce behavioral challenges
- Beach Center on Families and Disability
Conducts reseach and provides information on topics concerning behavior and disability
- Center for Motor Behavior and Pediatric Disabilities
Conducts and disseminates basic scientific research to better understand the complexity of individuals with Down syndrome, cerebral palsy, and spina bifida
- National Association for the Dually Diagnosed (NADD)
An association for persons with developmental disabilities and mental health needs
- National Information Center for Children and Youth with Disabilities (NICHCY)
NICHCY is a central source of information on pre-adolescents and teens with disabilities. It features a clear and detailed guide to IDEA, the law authorizing early intervention services and special education, and State Resource Sheets to help you connect with disability agencies and organizations in your state
- Positive Behavioral Interventions and Support Technical Assistance Center
Established by the Office of Special Education Programs, US Department of Education to give schools information and technical assistance for identifying, adapting, and sustaining effective disciplinary practices
- Research and Training Center on Family Support and Children's Mental Health
Dedicated to promoting effective services for families and their children who are, or may be affected by mental, emotional or behavioral disorder
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