Overall, an organized network for screening and surveilling youth with ASD for development of challenging behavior does not exist and the current procedures are inadequate.

It is critical to prevent severe challenging behavior from emerging that routine well-child checkups (early childhood) and annual well-checks (later childhood adolescents, adulthood) occur and include screening and follow-up for challenging behaviors.

The National Research Council and Institute of Medicine conducted an extensive review on interdisciplinary research on prevention and suggested that childhood behavior disorders are “preventable” (O’Connell et al., 2009, pp. xii-xiv; Fahmie et al., 2020), suggesting that early identification and targeted treatments can mitigate the occurrence and development of challenging behavior. Since challenging behavior may persist over time, prevention should be of high priority to avoid costly and harmful outcomes (Waddell et al., 2018).

When treatment in the primary care office is not found to produce socially significant reductions in challenging behavior, increasingly individualized and specialized intervention can be pursued.

McGuire et al. (2016) developed a practice pathway designed to help primary care providers (PCPs) screen, assess, coordinate treatment, and monitor challenging behavior displayed by their patients with ASD in collaboration with parents, schools, and specialized-care providers. From birth, caregivers form close and collaborative relationships with their PCPs. These relationships and the frequency of visits with the PCP allow for close and consistent monitoring of developmental progress ranging from routine hearing and vision checks to developmental milestones (reflexes, social skills, motoric development, autism symptoms). Thus, PCPs offer a unique relationship in which on-going assessment and monitoring of challenging behavior can occur.

McGuire and colleagues (2016) first recommended to screen for the presence of challenging behavior. The following steps are recommended:

Step 1: Assess for irritability and problem behavior (I/PB). Ask at every visit (regularly) if I/PB occurs regularly or since the last visit. Give more weight to parent report, as the child’s behavior in an unfamiliar setting (e.g., doctor’s office) may not be consistent with typical behavior.

Step 2: Assess safety. Determine if there is eminent risk of harm to self or others. If so, immediate intervention is warranted, and referral to specialty provider is recommended. If problem behavior occurs in the office, avoid physical restraint, avoid excessive talking that may overwhelm the patient’s verbal abilities, use visuals or concrete language, and direct the patient to a dimly lit, quiet, safe space, if available. Consider escort to an emergency department only if the patient does not calm down and has a history of I/PB and if the need for safety outweighs the risk of escalation in the emergency department.

Step 3: Review the patient’s history and level of functioning before and after the onset of I/PB. The patient’s level of functioning is critical to determining the significance of the problem behavior, setting intervention goals and strategies, and monitoring response.

Step 4: Prioritize and qualify specific behaviors for intervention. In children with more than one type of problem behavior, prioritize behaviors with a high level of harm for intervention. Obtain specific information about the presentation, intensity, and frequency of the challenging behavior, along with environmental variables that occur with the behavior.

Step 5: Consider all potential variables to I/PB. Assess and address medical problems (including physical exam, difficulties related to limited communication, psychosocial stressors for the child and/or family, maladaptive reinforcement patterns, and co-occurring psychiatric disorders).

Step 6: Consider pharmacologic intervention for severe I/PB. “In most cases, targeted psychopharmacologic interventions for I/PB should be considered only after any contributing factors are assessed and addressed. In the case of severe I/PB that is acutely or imminently unsafe, targeted psychopharmacologic intervention should be considered even while contributing factors are being evaluated.”

Step 7: Develop the individualized treatment and safety plan. Establish clear and measurable goals. Include an emergency plan.

Step 8: Implement and monitor the treatment plan. This should occur at least monthly, with additional phone calls as needed. Treatment response should be assessed through parent and teacher report, direct observation, and rating scales.

Step 9: At 3 months, do symptoms of I/PB still exist? If clinically significant symptoms still exist at 3 months, re-evaluate and revise the treatment plan.

Step 10: Re-evaluate every 3 months thereafter. “After a symptom-free period of ≥12 months, consider gradually tapering or discontinuing any psychotropic medications used for treatment of I/PB. Importantly, it is advisable to wait for a stress-free period to do this, even if this means prolonging medication treatment past 12 months. Positive behavioral supports, communication aides, and psychosocial supports should be left in place.”

View McGuire and colleague's Irritability and Problem Behaviors (I/PB) in Autism Spectrum Disorder: A Practice Pathway for Pediatric Psychiatry here.