Bonnie Patterson MD

Behavioral studies from the 1960s, '70s, and '80s variously described children with Down syndrome as good tempered, affectionate, placid, cheerful, stubborn, sullen, withdrawn, and defiant (Pueschel et al., 1991). In 1972, Barron published a study looking at the temperament of individuals with Down syndrome and concluded that behavior in his study group was similar to the general population if mental age was taken into account (Pueschel et al., 1991). In recent years, it has become evident that the old stereotypes are incorrect and that children and adults with Down syndrome have the same range of temperament and behavior as the general population.

Physicians and other professionals involved in the care of people with Down syndrome are often asked by parents and teachers for help in understanding the behavior difficulties that impact on the social and educational development of their children and can be disruptive in the home and the classroom. The definition of what a behavior problem is varies from person to person, but certain guidelines can be helpful in determining when a simple "problem" becomes a "behavior problem." These would include behaviors that interfere with development/learning; that are disruptive to the family/school; that are harmful to the child or others; and that are discrepant from what might be typically displayed by someone of comparable development.

When evaluating children and adults with Down syndrome for behavioral concerns, it is important to determine whether there are acute or chronic health problems impacting on development and/or behavior. Vision and hearing problems can have a significant effect on a person's ability to function both at home and in the school/workplace setting and should be monitored closely as recommended in the Healthcare Guidelines for Persons with Down Syndrome (Cohen, 1999). Other medical problems that can be associated with behavioral changes include: hypo- and hyperthyroidism, celiac disease (sensitivity to oats, wheat, barley, and rye), sleep apnea, anemia, gas-troesophageal reflux, and constipation. Evaluation by the primary care physician to assess for medical/neurological problems is an important component of the workup for behavioral concerns in persons with Down syndrome of any age.

Parents, teachers, and therapists frequently report compliance issues or oppositional behaviors in children and adults with Down syndrome. When evaluating these behaviors, it is important to clarify the frequency, duration, and intensity. Descriptions of the child's behavior during a typical day both at home and at school can help determine the antecedent event that may have precipitated the oppositional or noncompliant behavior. Some people with Down syndrome who are described as oppositional, stubborn, or aggressive are in actuality using behavior as a means to communicate secondary to their significantly impaired verbal expression. It is important when evaluating a person for behavioral problems to have a clear understanding of their language and cognitive development. Because people with Down syndrome often have strong social adaptive skills, it is sometimes mistakenly assumed that receptive and expressive language skills are at that same level of functioning. This misperception can lead to difficulties in the classroom or workplace, particularly if the person is not provided with support services to help develop socially appropriate nonverbal responses. Children with Down syndrome are very adept at distracting parents and teachers when they are challenged with a difficult task. This is done to remove themselves from a frustrating situation and may be interpreted as oppositional or stubborn. When evaluating a child or adult with Down syndrome for compliance issues, it is important to assess speech-language abilities, hearing status, and general cognitive development. Understanding how their developmental strengths and weaknesses are related to the perceived difficult behavior will help in development of an intervention plan for home, school, or workplace.

The definition of attention deficit hyperactivity disorder (ADHD) includes attention problems being present for at least 1 year occurring in more than one setting and behavior characterized by inattention, dis-tractibility, overactivity, and impulsivity. Attention problems are often reported in children with Down syndrome by parents or teachers but should be evaluated with the child's developmental age in mind rather than chrono logical age. The use of parent and teacher rating scales, such as the Conner's Rating Scale or the Achenbach Child Behavior Checklist, can aid in making the diagnosis. (The scales used must be appropriate for the child's developmental level.) If children with Down syndrome are diagnosed with ADHD, the interventions are the same as those for children of a similar developmental age without Down syndrome. Behavioral strategies will need to be instituted both at home and at school, and if a psychostimulant medication, such as Ritalin or Adderall, is prescribed it is important to remember that children with Down syndrome may be more sensitive and require a lower dose. Children with language processing problems are sometimes misdiagnosed with ADHD because of their difficulty in processing verbal information, which can manifest itself as inattention and dis-tractibility. Anxiety disorders can also present as problems with attention and impulsivity. A multifactored evaluation including observation in the classroom or home setting is helpful in the assessment of children with suspected ADHD.

Parents of adolescents and young adults with Down syndrome sometimes report regression of self-care skills, reduced motivation or energy, social withdrawal, and functional decline. Many parents and professionals fear that these changes in behavior may be early signs of Alzheimer disease; however, in most situations that is not the case. These changes can be signs of depression and/or anxiety. Transitions at home and at school, such as siblings leaving for college or marriage, changes in parent's health status, and graduation from high school, can often be related to the onset of feelings of anxiety and sadness. The evaluation of behavior changes should include a thorough medical examination to rule out chronic or acute health problems that could be impacting on day-to-day function at home and in the workplace. If depression and/or anxiety is diagnosed, medical management is often successful in treating the symptoms. Behavioral counseling by an experienced professional can be beneficial for both the adult with Down syndrome and the family. Self-talk is common in adolescents and young adults with Down syndrome and is not an indication of serious psychiatric illness. Young adults with Down syndrome may also continue to have imaginary friends.

Obsessive-compulsive behaviors are often reported in children and adults with Down syndrome. A study by Evans and Gray published in April 2000 reported that children with Down syndrome had similar mental age-related changes and compulsive-like behaviors compared with mental age-matched controls. Younger children (both typical and those with Down syndrome) exhibited significantly more compulsive behaviors than older children. Children with and without Down syndrome did not differ from each other in the number of compulsive behaviors they engaged in, although children with Down syndrome engaged in these behaviors more frequently and more intensely.

Intervention strategies for treatment of behavioral problems are quite variable and dependent on the child's age, the severity of the problem, and the setting in which the problem is most commonly seen. Local parent support groups can often help by providing suggestions, support, and referral to community treatment programs. Psychosocial services in the primary care physician's office can be used for consultative care regarding behavior and developmental issues. As noted above, when evaluating behavior problems it is important to have a clear understanding of the person's developmental and language skills, particularly when noncompliant behaviors are reported. Medical assessments should include vision and hearing screens and thyroid tests if they have not been done within the past year. Chronic behavioral problems often warrant referral to a behavioral specialist experienced in working with children and adults with special needs. The use of medication for help in behavior management must be discussed with the primary care physician and specialists involved in the child's care. Children with Down syndrome may be more sensitive to certain medications. In older adults who present with new-onset behavioral changes, assessment for Alzheimer disease should be part of the medical work-up. Reports of loss of memory for activities of daily living skills, familiar routines or places, and people may also be helpful in the diagnostic process. In the older adult it is important to provide support and education for the person's caregivers whether they be family members or the staff of a nursing home.

Guidelines for development of a behavioral support plan include the following:

• What function does the behavior serve for the person?

• What behavior could meet that need in an acceptable way?

• What are the antecedents of the behavior?

• What are the consequences of the behavior?

• What are the frequency and duration of the target behaviors?

• What are the reinforcers for the individual?

• Have all medical factors been investigated? (Disability Solutions, 1999)

If at all possible, family members and caregivers should try to reduce stress when dealing with a child or adult with significant behavioral problems. Suggestions include increasing the number of people in the person's life who provide direct care, giving the caregiver permission to be angry/sad/upset, etc., and anticipating situations that result in behavioral outbursts and trying to prevent them before the behavior occurs.

References

Cohen W.I., Healthcare Guidelines for Individuals with Down Syndrome: 1999 Revision (Down Syndrome Preventive Medical Check List) is published in Down Syndrome Quarterly (Volume 4, Number 3, September, 1999, pp. 1-16), and these excerpts are reprinted with permission of the Editor. Information concerning publication policy or subscriptions may be obtained by contacting Dr. Samuel J. Thios, Editor, Denison University, Granville, OH 43023.

Disability Solutions (1999): Practical approaches to behaviors that drive you crazy. 4:1-14.

Evans DW, Gray FL (2000): Compulsive-like behavior in individuals with Down syndrome: Its relation to mental age level, adaptive and maladaptive behavior. Child Dev 71:288-300.

Pueschel SM, Bernier JC, Pezzullo JC (1991): Behavioural observations in children with Down's syndrome. J Ment Def Res 35:502-511.

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