A Closer Look

How would you respond to Kofi’s mother?

Acknowledge
  • The first step in such an emotionally charged encounter is to acknowledge the mother’s difficulties.
  • Telling her you are glad she has come to see you reaffirms her decision to seek help from you for this type of problem.
  • Explaining that these behaviors are common in children with ASD and can be treated successfully may provide reassurance.
Establish Goals
  • Establishing goals for the visit up front and prioritizing them makes the visit more manageable for both you and the parent. Stating that, together, you will try to unravel the behavioral deterioration, but that it may take several visits and perhaps other consultations, sets realistic expectations.
  • Knowing what behaviors are most concerning for Kofi’s mother helps you know where to focus your energies in counseling and treatment.
Next Steps
  • Ask questions about the type of treatments the mother is interested in or has read about. Is the mother looking for a specific behavioral intervention, pharmacologic treatment, or just psychosocial support?
  • By acknowledging that follow-up visits may be necessary before successful intervention, you reassure the parent that there is continuity with the clinician, thereby strengthening the therapeutic alliance.

 

After hearing the mother’s story, what further information would you like?

Physical Causes

Any new maladaptive behaviors in a child with a communication disorder, such as ASD, warrants an inquiry into possible physical causes. Gather information about the following at the first visit, at another longer scheduled visit, or over multiple visits depending on the practicalities for you and Kofi’s mother.

  • Dental abscess
  • Headache
  • Bone fracture
  • Constipation
  • Diarrhea
  • Allergies
  • Vision problems
  • Dietary history

It is important to remember you may be the only person in the care team who considers medical causes and examines the child thoroughly. Onset, chronicity, potential triggers, and alleviating factors provide important clues. Gather a complete review of systems, including a diet history to determine if there might be an association with the problematic behaviors. Ask detailed questions about appetite, sleep, and energy.

Onset of Behaviors

Any variation in history around the time of the onset of these behaviors should be pursued, including a travel history.

  • Kofi’s history of “loose, foul-smelling stools” suggest the possibility of malabsorption or infection, especially if the timing of the stool and behavioral change coincide. As an aside, there has been controversy surrounding the theory that autism is caused by malabsorption in the gastrointestinal (GI) tract resulting in excessive levels of opiods in the central nervous system and an increase prevalence of GI disorders. However, there are no rigorously designed studies that support this hypothesis. In a long-term, population-based study, the co-occurrence of GI symptoms in children with autism was no higher than in normal cohorts.
  • Irritability and insomnia can be symptoms of obstructive sleep apnea or gastroesophageal reflux disease.

All this information, along with a physical and neurological exam, will guide you in deciding whether to pursue a medical workup and what path to take in that workup.

Environment

While pursuing a medical etiology for the behavioral deterioration, gathering information about the child’s environment can also give you a context for these behaviors. Changes around the time the behavior worsened are particularly helpful. Ask the parent to describe the home and school settings:

  • Who lives at home?
  • Are there siblings?
  • How many students are in the classroom?
  • How does their functioning compare with Kofi’s?
  • How experienced are the teachers and aides in working with children with autism?
  • What are the triggers and alleviating factors for the behaviors?
  • Do the behaviors occur less in some settings and more in others?
  • Do they occur during transitions?
  • Was there a recent stressful event in the family?
  • What, if anything, has been done about high BMI?
Previous Efforts – Environment

Investigate any interventions Kofi’s mother and school have tried to this point.

  • Details about the quality of these interventions are valuable, although sometimes difficult to determine, because often these interventions have not been applied effectively, consistently, or long enough to work. Direct communication from teachers or other professionals involved with the child provides additional insight into behaviors and interventions.
  • Behavior rating scales or checklists (e.g. Childhood Behavior Checklist (CBCL), Strengths and Difficulties Questionnaire (SDQ), and Aberrant Behavior Checklist (ABC)) can be useful for categorizing behaviors and quantifying their intensity. They can also be used to establish a baseline and track treatment.

Kofi’s mother has tried approaches based on applied behavioral analysis. This includes a functional behavioral analysis (FBA). This can be a useful way of analyzing and identifying strategies to cope with problem behaviors and the environment(s) where they occur. It is important to recognize that maladaptive behaviors in children with developmental delay are often a means to communicate.

  • An FBA can be performed at home or by the school psychologist to provide more information about behavior in that setting. It involves using direct observation to look at a behavior in the context of what occurs before and after. This approach can be used to identify triggers and reinforcers of problem behaviors and to evaluate the communicative intent of the behavior.
Parent Perspective

Before treating any child with a behavioral problem, ask questions that enhance your understanding of the parent’s perspective of the problem.

  • What does Kofi’s aggression and irritability mean to the mother?
  • To whom does she attribute these behaviors?
  • Does she blame herself or others?
  • Does she think autism has anything to do with these behaviors?
  • How worried is the mother about her safety or the safety of others?
  • Is she concerned that these behaviors are disruptive to the family and class?
  • How much do these behaviors impair Kofi’s ability to learn or have meaningful relationships?

Information about how a parent sees or feels about the problem allows you to discuss the treatment plan in a sensitive manner.

Off-Label Medications

Several off-label medications are used to target aggression and irritability. It is important to be aware of side-effect profiles, contraindications, and health monitoring in children on these medications. While side effects should be monitored by the prescriber, the primary care provider also needs to make sure these are monitored, be aware of the possible drug interactions with other medications prescribed, and know the side effects so they can be considered in the differential diagnosis of symptoms brought to the primary care office for treatment.

How would you prioritize this mother’s concerns and questions?

Aggression and Irritability

The most pressing behavior is Kofi’s aggression and irritability, followed by sleep dysregulation and hyperactivity.

Several pharmacologic agents can be used to treat aggression and irritability. The atypical antipsychotics risperidone and aripiprazole have been approved by the FDA for treatment of irritability in children with autism.

Risperidone has the strongest evidence for efficacy. Unfortunately, risperidone has been shown to cause weight gain and somnolence. Aripiprazole, another atypical antipsychotic approved by the FDA in 2009, is favored by some clinicians because it may be associated with less dystonia, smaller increases in prolactin levels, and less QTc prolongation. Risperidone will be discussed in further detail later on in this case.

Off-Label Medications

Several off-label medications are used to target aggression and irritability. It is important to be aware of side-effect profiles, contraindications, and health monitoring in children on these medications. While side effects should be monitored by the prescriber, the primary care provider also needs to make sure these are monitored, be aware of the possible drug interactions with other medications prescribed, and know the side effects so they can be considered in the differential diagnosis of symptoms brought to the primary care office for treatment.

Chart
How would you prioritize this mother’s concerns and questions? Chart.
Medication Indications Side Effects
Alpha2-adrenergic agonists (guanfacine and clonidine) ADHD, aggression, oppositionality, hyperactivity, sleep disturbances Hypotension, sedation, dry mouth, headache, constipation
Opiod antagonist (naltrexone) Irritability, repetitive/self-stimulatory behaviors, hyperactivity Insomnia, headache, decreased appetite, bitter taste
Psyschostimulants (e.g., methylphenidate, dextroamphetamine) Aggression, irritability, inattention, impulsivity, hyperactivity Appetite loss, insomnia, headache, irritability, withdrawn behavior, tachycardia, hypertension (not recommended in children with preexisting heart disease or defects), growth retardation (chronic use)
Serotonin reuptake inhibitors (e.g., fluoxetine, sertraline) Aggression, impulsivity, mood lability, irritability, sleep disturbances Sedation, dry mouth, constipation, suicidality (black box warning)
Monitoring Off-Label Medications

Compared with risperidone, these medications are not as well studied in children with autism. Some argue these medications are less effective and have a higher propensity to cause adverse effects in children with autism.

Many primary care providers (PCPs) are inexperienced in prescribing and managing psychotropic medications, especially in children with autism. Regular monitoring, sometimes as frequently as weekly in the initial stages of starting a medication, is warranted.

Weight, height, blood pressure, and heart rate are important measurements to document at each visit for certain medications; for others (e.g., atypical antipsychotics), laboratory tests, such as fasting lipids, liver function tests, and serum glucose, are recommended.

Because these medications are not well studied in this population and carry a high potential for adverse side effects, consultation with or referral to a mental health specialist is recommended. Typically, child psychiatrists, developmental-behavioral pediatricians, and pediatric neurologists are formally trained to treat children with ASD with psychotropic medications and can assist with dosing and titration schedules.