Behavioral Approaches to Assessment and Early Intervention for Severe Problem Behavior in Intellectual and Developmental Disabilities

PHENOMENOLOGY OF PROBLEM BEHAVIOR

Description and Prevalence

Children with intellectual and developmental disabilities (IDDs) are at increased risk for problem behavior.¹ A subset of these individuals develop severe problem behavior, which can pose serious and immediate risk for injury, loss of function, disfigurement, and even death.² Self-injurious behavior (SIB) includes behaviors such as head-banging, head hitting, self-biting, and self-scratching. These can cause localized swelling, bruising, and bleeding; loss of tissue from tongue, lips, ears, and nose; blindness from retinal detachment; and permanent disfigurement.³ Aggressive and disruptive behaviors can reach comparable levels of severity and result in severe injuries to family members and staff.⁴ Pica (the ingestion of nonedible items) and elopement (leaving a supervised area without caregiver knowledge) can result in injury or death.⁵

Estimates vary widely, but approximately 50% of individuals with IDD experience some form of problem behavior, with a smaller proportion (5%–10%) exhibiting very severe problem behavior with extreme consequences for families and caregivers.^6–8 These problems appear to be more common among individuals with IDD who also have autism spectrum disorder (ASD).^4,9 Other known risk factors for problem behavior include greater deficits in intellectual functioning and communication, and the presence of sensory impairments.^1,10 Recently identified risk markers include repetitive and restricted behavior and interests, overactivity/impulsivity,^11,12 and prenatal factors (level of maternal education, maternal smoking, and electronic fetal monitoring during labor) associated with SIB in children with ASD.^13,14

In this population, problem behavior is a heterogeneous phenomenon. Onset of problem behavior may occur in early childhood or adolescence, or adulthood in some cases. Individuals may present with one type of problem behavior or may engage in multiple forms. These behaviors can occur from dozens to hundreds of times daily or episodically. Problem behaviors sometimes co-occur with irritability or in the context of an outburst where there also are expressions of anger, frustration, and other negative emotional states.¹⁵ Because these behaviors can vary greatly in their complexity and intensity, so does their impact on children and families. When problem behaviors occur regularly, and with high intensity, they might produce injuries to self or others, restrict participation in activities appropriate for the individual’s developmental level, and necessitate a higher level of care (constant supervision, multiple people required to manage problem behavior when an episode occurs, and so forth) and increased emergency room visits.¹⁶ As a result of these many challenges, it is more likely that medication is overprescribed for this population with poor efficacy and high risk of negative side effects.^17,18 When these behaviors are severe and persistent, they can lead to mistreatment, including inappropriate restraint and seclusion,¹⁹ expulsion from school, placement in restrictive settings, and occurrence of physical and emotional trauma to family members.^20–22 Family members often report feeling isolated, and financial resources are strained as a result of additional expenses.

Establishment of Problem Behavior

Problem behavior in this population is thought to be the product of the interaction between deficits stemming from IDD and experiences that reinforce and strengthen these behaviors.^23,24 Deficits in communication and adaptive skills and limited ability to regulate emotions may increase the frequency and intensity of frustrative experiences, setting the stage for episodes of irritability and problem behavior. Because problem behavior often is dangerous or socially unacceptable, caregivers understandably work to calm children via redirection, consolation, or interruption.²⁵ For example, if a child engages in SIB when presented with instructional demands, the caregiver may give the child a break in an attempt to calm the child and avoid injury or disruption of the environment. Although well-intended, these reactions sometimes may reinforce the problem through basic learning processes and thus increase its future occurrence. Caregivers sometimes also actively work to avoid situations that might cause distress by altering their routines—but if this process of accommodation continues and expands to other situations, then altered routines to avoid challenging situations may become highly disruptive to the point they are unsustainable.²⁶ Thus, although efforts to make problem behavior cease or to avoid situations that occasion it may provide some immediate relief to the caregiver, such interactions can lead to the establishment and maintenance of maladaptive caregiver-child interaction patterns.^25,27–29 These interaction patterns can impair functioning further as the avoidance of potentially challenging situations expands over time and across settings and becomes a source of chronic stress for parents.

BEHAVIORAL ASSESSMENT AND TREATMENT OF PROBLEM BEHAVIOR

For any given case, the historical events that led to establishment of problem behavior may be difficult if not impossible to identify. Functional behavioral assessment is acknowledged to be the best approach to precisely identify events in the environment that presently occasion problem behavior (antecedents) and the reinforcers that strengthen and maintain those behaviors (consequences). Once identified, knowledge of these controlling events can inform the development of individualized behavioral interventions that are directly tied to the variables that maintain the behavior. Such knowledge also can contribute to identifying what other elements of the clinical presentation should be targeted with pharmacologic interventions, including emotion dysregulation, irritability, hyperactivity, and so forth.^30,31

Applied Behavior Analysis

Applied behavior analysis (ABA) is a discipline that utilizes principles of learning and behavioral science for the purpose of addressing problems of social significance.³² ABA-based treatment for addressing the needs of persons with IDD has 2 broad domains of application: (1) educational treatment delivered in the context of a comprehensive intervention and (2) problem-focused treatment, aimed at addressing specific problems. Comprehensive ABA intervention is broad in its scope, aimed at establishing educational and adaptive skills to have an impact on global measures of functioning when applied over an extended period (301 service hours per week, over a span of years is not uncommon). When implemented early, comprehensive treatment often is referred to using the term, early intensive behavioral intervention.^33–35 Problem-focused ABA interventions are more relevant to the current discussion on problem behavior, because these are aimed at addressing more specific problems—most typically, problem behavior, such as SIB, aggression toward others, pica, disruptive behavior, and elopement. Problem-focused interventions are more targeted and, therefore, more time-limited. The goal of these interventions is reducing problem behavior while also establishing and strengthening adaptive behaviors. Some individuals may require both types of ABA treatment. Despite their differences, both comprehensive and problem-focused ABA interventions are based on the same empirically validated learning principles, which involve the objective measurement of behavior using direct observation of behavior, carefully controlling environmental variables for the purpose of pinpointing specific determinants of the severe problem behavior to inform treatment development, and isolating operative components of behavioral interventions.

Empirical Support for Applied Behavior Analysis

Both comprehensive and problem-focused ABA treatments have a strong base of empirical support. Group designs (including randomized controlled trials) have been used to evaluate comprehensive ABA treatment,³⁴ and single-case experimental designs have been extensively used to document problem-focused ABA interventions (assessment and treatment of problem behavior). Several meta-analyses have examined ABA problem-focused interventions for decreasing rates of various types of problem behavior (eg, see Hayaert and colleagues³⁶ and Harvey and colleagues³⁷). Structured evaluative reviews also have demonstrated that ABA-based approaches are efficacious for aggression,³⁸ SIB,³⁹ elopement,⁴⁰ and, more broadly, severe problem behavior.^41,42 Problem-focused ABA treatment of problem behavior also has been supported by the Autism Evidence-Based Practice Review Group⁴³ and the National Standards Project.⁴⁴

Functional Behavioral Assessment

As applied to the assessment and treatment of problem behavior, problem-focused ABA relies heavily on functional behavior assessment. Functional behavior assessment involves a range of techniques aimed at identifying the variables that occasion and maintain problem behavior. Rating scales, interviews, and observations of problem behavior in uncontrolled naturalistic settings and controlled formal assessments can be performed. Generally, less-intensive assessment procedures should be used initially (ie, interviews and rating scales), reserving more time and resource-intensive assessments if less-intensive procedures fail to produce clear assessment findings or lead to the development of an effective intervention. Research on methods that rely on the reporting of others shows they have limited validity relative to methods involving direct observation of behavior. A formal controlled functional analysis, in which conditions are systematically manipulated, is the most valid and scientifically rigorous method of assessment because it directly examines how problem behavior changes as environmental antecedents and consequences are systematically altered.⁴⁵ For example, if a child’s problem behavior is hypothesized to be maintained by attention from a caregiver, the test condition would involve arranging a situation in which the caregiver provides a form of attention (e.g., telling child to stop, consoling him/her) whenever the problem behavior occurs. In the control condition in this case, the caregiver interacts with the child, without providing attention for problem behavior.

Classification of problem behavior is based on its function, which includes 2 broad classes, both of which include subclasses: (1) socially maintained (occasioned and reinforced through the interactions of others) and (2) automatically maintained (occurs independent of social contingencies). SIB is socially maintained in two-thirds to three-fourths of cases and automatically maintained in one-fourth of cases.^46–48 Aggression most often is socially maintained, whereas pica most often is automatically maintained.⁴⁹ Within the broad class of socially maintained problem behavior, the subclasses include problem behavior maintained by (1) attention from adults or peers, (2) escape from or avoiding unpleasant circumstances (eg, demands placed on them by a parent or teacher), and (3) acquiring or gaining access to preferred items, activities, and so forth. In contrast, automatically maintained problem behavior persists independent of interactions with others and presumably via some unknown biological process. That is, the act of engaging in the problem behavior directly produces consequences independent of social interaction that are presumed to be reinforcing in some way.

Function-Based Treatment

Function-based treatment represents best practices in ABA.⁴⁶ With knowledge of the controlling variables of problem behavior, precisely targeted interventions can be devised. Broadly speaking, this approach involves 2 primary components designed to (1) strengthen appropriate alternative behaviors (using reinforcement) concurrently with (2) the withholding of reinforcement that maintains the targeted problem behavior (operant extinction). One of the most commonly researched treatments of problem behavior maintained by social consequences is referred to as functional communication training (FCT). FCT involves training a child to emit an appropriate communicative response to access reinforcement in lieu of problem behavior. Described in more than 200 studies, FCT is an empirically supported treatment⁵⁰ that also has been shown to be highly effective using meta-analysis⁵¹ and in 3 consecutive-controlled case series studies.^52–54 Noncontingent reinforcement (NCR) is another widely researched function-based treatment that has been demonstrated to be empirically supported treatment using the APA criteria⁵⁵ and via meta-analysis.⁵⁶ NCR involves the response-independent delivery of reinforcers responsible for maintaining problem behavior at fixed or variable times during treatment, thus attenuating motivation for problem behavior. A range of other ABA problem-focused interventions have been shown to be efficacious (see Hagopian and colleagues⁴⁹ for a review).

EARLY INTERVENTION AND PREVENTION

The benefits of early intervention are well documented for children with ASD^57,58 and children with IDD.^59–61 For example, outcome studies on intensive programs for children with ASD that focus on skill acquisition and reduction of behavioral excesses have reported significant improvements, including gains on estimates of intellectual functioning, success in regular education classrooms, and functioning similarly to non-ASD samples.^34,57,58 Similarly, elimination or prevention of problem behavior in young children with IDD permits access to early intervention and preschool programs from which they otherwise might be excluded because these programs are not equipped to deal with severe problem behavior. Such programs have components (teaching cooperation, early language skills, and so forth) that would be particularly beneficial to young, at-risk children. Thus, early intervention for problem behavior is highly cost-effective, relative to costs of intensive treatment, and can produce measurable improvement in long-term outcomes for children with IDD.

As discussed previously, research findings from the field of ABA have shown that patterns of caregiver responding and child communication deficits contribute greatly to the maintenance of severe problem behavior exhibited by individuals with IDD.⁴⁸ These findings have been replicated with young children who exhibit SIB and other problem behaviors.^62,63 Outcomes of functional analyses conducted with children as young as 1 year to 6 years indicated that in most cases, problem behavior is maintained by social consequences—consistent with research on older children and adults.^48,64 Treatment using FCT and other function-based interventions (eg, NCR) produced notable reductions in problem behavior and increases in communication and other appropriate behaviors. In addition to the impressive clinical outcome, parents found the behavioral assessment and treatment procedures very acceptable.⁶⁵ Thus, best practice procedures, when applied at an early age, can effectively treat severe problem behavior.

In contrast to the extensive research literature on treatment of severe problem behavior, preventing the development of problem behavior has received little attention. Initial studies have applied FCT as a preventive approach with children at risk for development of problem behavior, with promising results. Young children taught communication phrases that were substitutable for common social functions of problem behavior (ie, to obtain adult attention or preferred activities or to escape task demands) showed decreases in minor problem behavior; frequency and severity of problem behavior increased in control group children, demonstrating a preventive effect for FCT.

Recent studies have examined prevention of problem behavior using single-case experimental designs (rather than group designs) because this approach permits precision in within-subject measurement, replication, and control, which has great utility in the initial stages of experimental evaluation of prevention approaches.⁶⁶ Sensitivity tests based on functional analysis methods have been developed to screen for the emergence of problem behavior in single cases. Communication training is conducted in the specific contexts where problem behavior is likely to occur, and then a prevention effect of FCT is demonstrated. A laboratory model to study the prevention of development of problem behavior also has been piloted,⁶⁷ which integrates basic and applied behavioral research. In sum, these studies suggest that FCT may be a feasible approach to preventing the development of more severe forms of problem behavior.

PEDIATRIC CARE: SURVEILLANCE, PREVENTION, AND EARLY INTERVENTION

Surveillance

In light of the increased risks for children with IDD to display severe problem behavior, ongoing surveillance on the part of pediatricians for the early emergence of this problem is necessary. The presence of genetic conditions that may be associated with problem behavior, the diagnosis of ASD, intellectual and sensory impairments, and deficits in adaptive skills are known risk factors for problem behavior and, therefore, must be assessed to determine the relative risk. Many recommendations on pediatric management of ASD^68–70 also are applicable to the broader population of children with IDD. Awareness of the family’s social supports, resources, and the caregivers’ capacity to physically manage problem behavior can inform efforts to seek supports available through insurance or social service organizations. Evaluation of caregiver stress and psychiatric issues also is necessary to guide caregivers to access services necessary to address their needs (Box 1).

Box 1. Prevention and early intervention for problem behavior.

Primary prevention

Referral for early intervention services for IDDs

Departments of health and education

Assessment

Child’s functioning

Caregiver capacity and resources

Education of caregivers

Education of caregivers on increased risk of problem behavior

Education of caregivers on resources

Ongoing surveillance for emergence of problem behavior

Injuries

Caregiver report

Observations during clinic visits

Early intervention

Assessment of problem behavior and caregiver capacity

Risks of problem behavior

Caregiver capacity and skills

Education of caregivers on caregiver-child interaction patterns

Referral to specialists

Secondary intervention

Referral to and collaboration with behavior specialists

Relevant factors to consider related to initiating medication management

Consider response to behavioral intervention

Consider risks of problem behavior

Consider comorbid medical and psychiatric conditions

Consider level of experience and knowledge

Consider referral to another physician with specialized expertise

If medication management is initiated

Monitor outcomes using objective measures

Monitor for potential adverse effects

Monitor regularly, adjusting dosage or medicine based on response

As discussed previously, problem behavior in IDD stems from the interaction of deficits associated with IDD and the environment. Problem behavior can be difficult to tolerate because it is potentially harmful to the child or others. Consequently, there often is a sense of urgency on the part of caregivers to interrupt problem behavior or even prevent it from occurring. Although sometimes necessary and even helpful, attempts to calm, console, and appease the child also can reinforce and, therefore, maintain the behavior in the long term. Caregivers inadvertently reinforcing problem behavior from time to time may not result in long-term problems, but persistent maladaptive patterns of interaction can be established through reinforcement processes that can increase the occurrence and severity of problem behavior over time. Therefore, the pediatrician has a critical role in educating caregivers about the potential risks related to the emergence of problem behavior to prevent these patterns of interaction from being established and to initiate early intervention efforts rapidly once it appears they are emerging. Surveillance by routinely inquiring about problem behavior at regular visits is essential to identifying emerging problem behavior and caregiver-child interaction patterns that may inadvertently strengthen problem behavior. Caregiver report of problem behavior may be the primary source of information, because some children may be inhibited in the examination room. Children’s behavior, however, and a caregiver’s reactions to problem behavior in the waiting area and in response to physical examination can be informative. As has been reported in other pediatric populations, including children dealing with chronic medical problems, caregiver responses that are overly indulgent or overly harsh are associated with negative outcomes.

Likewise, it also is important to identify what efforts caregivers undertake to avoid situations that occasion problem behavior. Accommodation involves efforts aimed at avoiding situations that could lead to problem behavior, including engaging in routines or activities that are disruptive to family functioning and appeasing a child when it appears problem behavior begins to occur. Although not all accommodations are unreasonable, some can be highly disruptive to functioning to the point they are not sustainable and maintain maladaptive interaction patterns where the child is in charge. Therefore, the level of risk should be based on consideration of injuries incurred, close calls, and the potential for injury based on consideration of how often the behavior occurs, its likely sequelae, and the level of effort necessary to prevent its occurrence.

Early Intervention

Referring caregivers to locally available early intervention services for children with IDD is essential, because these can provide families access to myriad services to promote development and positive caregiver-child interactions. Evidence supporting the efficacy of early intervention for children with ASD is robust. When the presence of problem behavior is evident, assessment of physical risks of problem behavior is important for determining what level of intervention is indicated. Any observation of injuries to a child or caregiver should be discussed. As discussed previously, problem behavior can include aggression, property destruction, SIB, elopement, pica, and other behaviors that pose risk to self and others. Within these different types, there is tremendous variation in both the form of the behavior and risks it may pose. Risk can be determined by the presence of injuries, the nature of the behavior itself, and the inherent risks it poses. Aggression can produce serious injury, anxiety, and post-traumatic stress to caregivers³⁸; SIB can result in infection, loss of tissue, permanent disfigurement, and loss of function³⁹; pica can necessitate surgery and result in poisoning, asphyxiation, and even death⁷¹; and elopement can result in injury or death.⁵ Caregiver reports of close calls where severe injury was narrowly avoided by caregiver vigilance can indicate level of risk. Likewise, risk also can be ascertained based on a review of what efforts currently are in place to supervise the child and to prevent injury: the more intensive the efforts needed, the greater the risk because such efforts are difficult to sustain over long periods of time (see Box 1).

Secondary Intervention

Once problem behavior is determined to be present and warranting intervention, a variety of options often exist. Some school systems provide intensive behavioral services, and some states mandate funding for services for children diagnosed with ASD. Because many states have recognized that ABA is the most empirically supported approach for problem behavior, licensure and funding for behavior analysts have increased the availability of services. If resources available through educational and public early intervention services are insufficient to meet the needs, referral for specialized behavioral services or the use of medication should be considered.⁷² Ideally, medication would be applied after a functional behavioral assessment has been conducted to identify environmental antecedents and child-caregiver interactions that may be reinforcing the problem behavior. Aripiprazole and risperidone have Food and Drug Administration approval for treatment of irritability in ASD and have been deemed appropriate to use if problem behavior poses risks to safety or could lead to more restrictive placement or if other interventions have been attempted and failed to produce sufficient improvement. Other medications have limited support for ASD⁷² and SIB.^73–77 Pediatricians must determine whether they possess sufficient experience and knowledge to initiate medication management or if referral to another medical professional is appropriate (see Box 1).

Although the combined use of medication and basic behavioral intervention requires further study and is not routinely practiced, this approach has been advocated by many. The general premise is that medication and behavioral interventions can work synergistically. Medications may decrease emotional reactivity, irritability, impulsivity, and other sources of dysregulation, whereas behavioral interventions target adaptive skills and alter maladaptive patterns of interactions (see Hagopian and colleagues³⁰). In addition, improved regulation produced by medication may increase a child’s ability to benefit from behavioral interventions. Finally, if behavioral and pharmacologic interventions are combined, behavioral data being collected to evaluate the behavioral intervention could be used to help evaluate the effects of medications. Whether medication is applied alone or concurrently with behavioral interventions, measuring outcomes in a systematic manner (eg, the Aberrant Behavior Checklist) helps assess outcomes and adverse effects.

KEY POINTS.

• Problem behavior occurs in 50% of children with intellectual and developmental disabilities; in 10% of cases, problem behavior is considered severe.

• Risk factors for problem behavior include presence of more severe intellectual disability, a diagnosis of autism, sensory impairments, and deficits in communication.

• Functional analysis and function-based treatments based on the principles of applied behavior analysis are considered best practices.

• Pediatricians play a crucial role in early identification of problem behavior, referral to early intervention services, and parent education.