Down syndrome – what are some behavioural challenges typical in people with Down syndrome?

The definition of a “behaviour problem” varies but certain guidelines can be helpful in determining if a behaviour has become significant.
Does the behaviour interfere with development and learning?
Are the behaviour disruptive to the family, school or workplace?
Is the behaviour harmful to the child or adult with Down syndrome or to others?
Is the behaviour different from what might be typically displayed by someone of comparable developmental age?

The first step in evaluating a child or adult with Down syndrome who presents with a behaviour concern is to determine if there are any acute or chronic medical problems related to the identified behaviour.

The following is a list of the more common medical problems that may be associated with behaviour changes.

  • Vision or hearing deficits
  • Thyroid function
  • Celiac disease
  • Sleep apnea
  • Anemia
  • Gastroesophageal reflux
  • Constipation
  • Depression
  • Anxiety

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

The behavioural 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 typically common in 2-3 year olds, but for a child with Down syndrome, they may begin at 3-4.

When evaluating behaviour in a child or adult with Down syndrome it is important to look at the behaviour in the context of the individual’s developmental age, not only his or her chronological age. It is also important to know the individual’s receptive and expressive language skill levels, because many behaviour problems are related to frustration with communication. Many times, behaviour issues can be addressed by finding ways to help the person with Down syndrome communicate more effectively.

What are some of the common behaviour concerns?

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 would be in the event of the child leaving 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.

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

Attention problems:
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 Conners 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 behaviours:
These can sometimes be very simple; for example, a child may always want the same chair. However, obsessive/compulsive behaviour can also be more subtly repetitive, manifesting through habits like dangling beads or belts when not engaged directly in an activity. This type of behaviour is seen more commonly in younger children with Down syndrome. While the number of compulsive behaviours in children with Down syndrome is no different than those in typical children at the same mental age, the frequency and intensity of the behaviour is often greater. Increased levels 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 individuals with Down syndrome. The diagnosis is usually made at a later age (6-8 years of age) than in the general population. Regression of language skills, if present, also occurs later (3-4 years of age). Potential intervention strategies are the same as for any child with autism. It is important for signs of autism to be identified as early as possible so the child can receive the most appropriate therapeutic and educational services.

How should parents and caregivers approach behaviour issues in individuals with Down Syndrome?

  1. Rule out a medical problem that could be related to the behaviour.
  2. Consider emotional stresses at home, school or work that may impact behaviour.
  3. Work with a professional (psychologist, behavioural pediatrician, counselor) to develop a behaviour treatment plan using the ABC’s
  4. of behaviour. (Antecedent, Behaviour, Consequence of the Behaviour).
  5. Medication may be indicated in particular cases such as ADHD and autism.

Intervention strategies for treatment of behaviour problems are variable and dependent on the individual’s age, severity of the problem and the setting in which the behaviour is most commonly seen. Local parent and caregiver 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 behaviour issues. Chronic problems warrant referral to a behavioural specialist experienced in working with children and adults with special needs.

What about behavioural changes in adulthood?
These can be caused by a number of factors: difficulty with transitions into adolescence or young adulthood, with the loss of social networks, departure of older siblings, death of loved ones, move out of the home or transfer from a protective school environment into a work situation; sensory deprivation, either visual (e.g. cataracts) or auditory (hearing loss); emotional trauma; hypothyroidism; obstructive sleep apnea; depression; and Alzheimer’s disease. While Alzheimer’s disease occurs earlier and more often in adults with Down syndrome than in the general population, not every behavioural or cognitive change in an adult with Down syndrome should be ascribed to this form of dementia. The reversible causes enumerated above should be considered, sought after and treated.

NDSS thanks special guest author Bonnie Patterson, MD for preparing this piece.

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