Neurobehavioral Concerns

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  Neurobehavioral Concerns in Children with Down Syndrome

Behavior is often a presenting concern by parents on behalf of children with Down syndrome. Although maladaptive behaviors are in no way unique to either young children with trisomy21, or intellectual disability both the type and severity of certain behaviors could be considered a marker, heralding the presence of some underlying neurobiological difference associated with atypical development. It's estimated that about 20% of children with Down syndrome have a secondary behavioral diagnosis. However parents and teachers may have concerns about behavior which do not warrant a secondary diagnosis, but nonetheless are present under certain circumstances or situations. 

What behaviors are considered typical for preschool children with Down syndrome?
Behaviors considered typical in any preschool child: 

  • Separation or stranger-anxiety, bedtime problems
  • Increased motor activity, very busy
  • Mischievous behavior for social attention 
  • Mild tantruming when limits are set or privileges denied

Behaviors which may be character-traits of some children with Down syndrome: 

  • Routine-oriented, resistant to change
  • Stubborn, persistent
  • Overly sociable, affectionate
  • Deliberate mischievous behavior for social attention

What other behaviors may be seen in some preschool children with Down syndrome?
Repetitive motor acts which are occasional and easy to interrupt

  • Waves objects, dangles strings, stares at hands, hums-moans, grinds teeth, rocks (especially when bored)
  • Tenses arms-legs, shakes-waves arms, grimaces, makes happy noises, (especially when excited)
  • Hypersensitive to touch (haircuts, tooth-brushing); sounds (loud noises, chaos)
  • Food refusal –based on textures

What behaviors are NOT typical for preschool children with Down syndrome?
Behaviors which result in significant interference with learning, socialization or safety concerns, especially when they occur across multiple environments (home-school-community)

  • Repetitive motor acts which are frequent, intense and difficult to interrupt
  • Body rocking, hand flapping, dangling strings-beads-belts, prolonged staring, throaty noises
  • Inability to focus, attend to tasks or organize play activities
  • Lack of interest imitating other children at play
  • Inability to understand spoken words
  • High motor activity resulting in unsafe or risky behavior- climbing, running off

Behaviors resulting in physical harm to self or to others

  • Self: Head banging or hitting, slapping, biting, poking eyes-ears-nose, skin-picking or scratching
  • Others: Hitting, kicking, hair-pulling or biting
  • Property destruction: throwing or breaking objects
  • Self injury: head-banging, hitting, bitting, skin picking

What is meant by the term “dual diagnosis”?

Dual diagnosis is a non-specific term or expression used to indicate the presence of a psychiatric or neurobehavioral disorder in a person who also has an intellectual disability. Perhaps 15-20% of children with Down syndrome (under 18yr) also have a dual-diagnosis

What features distinguish a psychiatric or neurobehavioral disorder from willful misbehavior?

Willful misbehavior is usually easy to spot as it results from a motivated desire to obtain something or avoid something. The purpose is usually obvious. Although willful behavior may be frequent and severe or have complex features, many behaviors are being maintained by multiple factors. Psychiatric or neurobehavioral disorders have a component of physiologic disturbance which increases their complexity 

An example of complex-severe behavior

Severity: repetitive self-injury is occurring
Intensity: behaviors are becoming more frequent and longer lasting, across different settings
Complexity: irritability and agitation occurs with episodes of urinary or bowel incontinence, followed by kindness and remorse.

What are some other “clues’ to look for besides the behavior itself?

Physiologic symptoms may be present
Abnormal or highly inconsistent: sleep pattern, fluctuating (irritable or unstable) mood, unusual response to sensory stimuli
Neurocognitive changes may be present
Abnormal or highly inconsistent: attention, gaze-preference, initiative-spontaneity, cognitive planning-organization, play routines or social interactions. Actual loss of established skills “developmental regression”
A medical condition may be present
Conditions causing pain, discomfort or high anxiety
A psychiatric disorder may be present in a 1st degree relative
Bipolar disorder, Schizophrenia, Autism, Obsessive-compulsive or Tic disorder
What is meant by the term co-morbidity or “co-occurring feature”?
A co-morbidity or “co-occurring feature” is when a primary neurobehavioral or psychiatric condition has other distinguishing features which can complicate the diagnosis, management and outcome, for example:

  • Autism with irritability and self-injury
  • ADHD with oppositional-defiant behavior
  • Disruptive behavior with anxiety and compulsive features
  • Obsessive-compulsive disorder with vocal tics
  • Depression with repetitive self-talk and yelling at imagined others​

Who should make the call regarding a dual diagnosis?

When a parent, therapist or teacher has concerns about obvious disruptive behavior, the primary care physician, or a developmental-behavioral pediatrician can help to establish and operationalize a “working diagnosis” designed to guide treatment strategy. If repeated attempts to manage behavior or treat the condition do not succeed, then consult a child psychiatrist, especially when severe or complex physiologic symptoms are present. It is critical that the evaluator be experienced in assessing children with developmental-intellectual disability. Speak with your child’s primary care physician, and seek a referral to a knowledgeable professional who can help guide you. This may be a developmental or behavioral pediatrician, a child psychiatrist or behavioral psychologist at an academic medical center.

Be prepared for what can be a litany of helpful but contradictory suggestions that are difficult to sort out, especially for a family in crisis! You want to work with professionals who can help you understand, evaluate and prioritize your various options, and are not overtly critical or threatened by your attempts to design a program that is best for your child. Professionals who offer you “my way or the highway” are no fun to work with, but occasionally do get it right.


Is it actually beneficial to have a dual diagnosis of ADHD, Autism or Disruptive disorder?

Many parents and teachers report feeling relief when they learn that a child who is having difficulty, can have a secondary diagnosis which helps to explain some aspects of the challenging behavior. In many cases such a label could entitle your child to more specialized educational and behavioral support services in the school or community. A secondary label or diagnosis is helpful for parents and professionals in designing, constructing and implementing long-term management strategies.

What may need to be done differently for your child if a dual-diagnosis is confirmed?

Contact your child’s school or intervention program to discuss changes to the IEP or IFSP. These are the most essential measures for managing behavior concerns in a preschool or school-aged child. Establish a firm, consistent with realistic expectations and discipline practices with predictable consequences. Defining “the rules” ahead of time helps both child and parent. Develop a positive behavior support plan to manage behavior proactively by reinforcing desired behaviors, and to manage aggressive or disruptive behaviors. Teachers and parents should all be trained to use the same procedures. Ensure that a functional or visually-based communication system - such as a picture board or picture exchange using photographs - is in place when speech is absent or non-functional. Consider the need for sensory-based strategies designed to minimize hyper-responsiveness to environmental stimuli (by avoiding noxious sensory stimuli); and maintaining a predictable, non-chaotic environment. Use behavioral-sensory techniques to calm or relax your child.

Develop Your Action Plan

If you suspect the presence of a neurobehavioral disorder, speak with your child’s pediatrician about the need for the following evaluations: Down Syndrome Clinic, Developmental-Behavioral Pediatrician, Child Psychiatrist or Psychologist or Behavioral specialist. In most circumstances, it is advisable to obtain an informed opinion independent of your child’s school program.


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