Use of Skin-Shock at the Judge Rotenberg Center

Use of Skin-Shock at the Judge Rotenberg Educational Center (JRC)

NIH Consensus Conference on Destructive Behaviors

Treatment of Destructive Behaviors in Persons with Developmental Disabilities

National Institute of Health Consensus Development Conference Statement
Volume 7, Number 9
September 11-13, 1989

Introduction

Developmental disabilities encompass many diagnostic categories; there are nearly 4 million people in the United States with such disabilities (see reference on page 5). The largest number of individuals with developmental disabilities are persons with mental retardation. This consensus statement is concerned with the treatment of severe destructive behaviors in persons with developmental disabilities that may be injurious to self or others or destructive of property. Most practitioners agree that serious destructive behavior is a major although uncommon problem among persons with developmental disabilities and one that cannot be ignored. Some methods of treatment, however, remain controversial.

Destructive behavior is defined as conduct that, due to its intensity and/or frequency, presents an imminent danger to the person who exhibits the behavior, to other people, or to property. Accordingly, intervention is necessary for the safety of the individual engaging in the destructive behavior, for those against whom the aggression is directed, and for the protection of property.

Seriously destructive behaviors can take unusual forms among persons with developmental disabilities, especially those with mental retardation. The range and form of these behaviors are broad, and they vary in severity, duration, and intensity. In some cases, 24-hour observation, supervision, and treatment are essential to protect individuals from self-injury or from injuring others.

The National Institute of Child Health and Human Development (NICHD) and the Office of Medical Applications of Research (OMAR) of the National Institutes of Health (NIH) sponsored the Consensus Development Conference on Treatment of Destructive Behaviors in Persons with Developmental Disabilities. Cosponsors included the National Institute of Neurological Disorders and Stroke, the National Institute of Mental Health of the Alcohol, Drug Abuse, and Mental Health Administration (ADAMHA), and the Division of Maternal and Child Health of the Health Resources and Services Administration.

After the scientific basis of the topic was defined a formal planning meeting was held. The planning committee included a parent of an individual with a developmental disability, and other expert consultants, and representatives from the following agencies:

National Institute of Child Health and Human Development, NIH.

Office of Medical Applications of Research, NIH.

National Institute of Mental Health, ADAMHA.

National Institute of Neurological Disorders and Stroke, NIH.

Administration on Developmental Disabilities.

Health Resources and Services Administration, DHHS.

U.S. Department of Education.

President's Committee on Mental Retardation.

The planning committee completed the following three tasks:

	Identification of disciplines to be represented on the panel and individuals from these disciplines who might serve as panel members.
	Formulation of consensus questions.
	Identification of topics of background papers and scientists qualified to develop the papers.

The consensus panel consisted of professionals representing a variety of scientific disciplines and included parents of children with developmental disabilities. No panel member was committed to a specific form of treatment for destructive behaviors.

The following questions served as the basis for this Consensus Development Conference:

	What are the nature, extent, and consequences of destructive behaviors in persons with developmental disabilities?
	What are the approaches to prevent, treat, and manage these behaviors?
	What is the evidence that these approaches, alone or in combination, eliminate or reduce destructive behaviors?
	What are the risks and benefits associated with the use of these approaches for the individual, family, and community?
	Based on the answers to the above questions and taking into account (a) the behavior; (b) the diagnosis and functional level of the individual; (c) possible effects on the individual, family, and community; (d) the treatment setting; and (e) other factors, what recommendations can be made at present regarding the use of the different approaches?
	What research is needed on approaches for preventing, treating, and managing destructive behaviors in persons with developmental disabilities?

The panel first convened in December 1988. Its members were presented with an extensive but preliminary bibliographic search on treatment of destructive behaviors that explored six data bases. This bibliography was updated in August 1989. Detailed plans for the background papers were also presented.

In four subsequent panel meetings, background papers were presented by their authors and extensively discussed and reviewed by panel members. Substantial revisions were subsequently made to the papers by the authors.

According to the NICHD consensus conference design, a draft report was prepared by the panel to serve the sole purpose of providing a basis for the conference.

The NIH made a broad effort to involve the greatest number of interested participants. In January 1989 many organizations were identified by the panel and others were advised of the proposed conference. Notices were placed in major professional journals, including the American Journal on Mental Retardation. In July 1989 more than 13,000 announcements inviting participation were mailed to groups and individuals with an identified interest in this area. The Federal Register announcement appeared August 4, 1989. The draft report of the panel was distributed to all registrants, to organizations with a recognized interest in the area, and to any person who requested the document.

This consensus conference was an open public meeting at which a summary of the draft report was presented by panel members. Additional data on a variety of treatment modalities were presented and discussed. The agenda also included testimony concerning the draft report from individuals and organizations. No individual or organization requesting to speak was denied the opportunity. All material received from respondents was distributed promptly to panel members. After the public meeting, panel members met to review and incorporate information received at the meeting into this consensus statement. The statement provides direct narrative answers to the proposed questions. Subsequent to the meeting the panel will revise the draft report to be consistent with the consensus statement, and the final report will be published as a monograph on the subject of the consensus conference.

Reference
1. Public Law 100-146 - October 1, 1987. "The term 'developmental disability' means a severe, chronic disability of a person which: (A) is attributable to a mental or physical impairment or combination of mental and physical impairments; (B) is manifested before the person attains age twenty-two; (C) is likely to continue indefinitely; (D) results in substantial functional limitations in three or more of the following areas of major life activity: (i) self-care, (ii) receptive and expressive language, (iii) learning, (iv) mobility, (v) self-direction, (vi) capacity for independent living, and (vii) economic self-sufficiency; and (E) reflects the person's need for a combination and sequence of special, interdisciplinary, or generic care, treatment, or other services which are of lifelong or extended duration and are individually planned and coordinated."

What are the nature, extent, and consequences of destructive behaviors in persons with developmental disabilities?

Destructive behavior is a major problem in persons with developmental disabilities. An estimated 160,000 individuals with developmental disabilities exhibited a significant degree of destructive behavior in the United States in 1988. The estimated total cost of care for these people exceeded $3 billion.

The two major categories of destructive behavior are self-injurious behavior (SIB) and aggression toward others or toward property. The most extreme cases involve those persons with serious SIB - perhaps 20,000 to 25,000 individuals. Their behaviors involve repeated self-inflicted, nonaccedental injuries producing bleeding, protruding and broken bones and other permanent tissue damage, eye gouging or poking leading to blindness, and swallowing dangerous substances or physical objects. SIB is especially perplexing because to observers the repeated self-infliction of pain seems so maladaptive and incomprehensible. Less serious for the individual, but potentially more dangerous for caregivers and family, are destructive behaviors involving repeated physical assaults that injure others. The treatment of all types of destructive behavior is difficult. In the context of concerns regarding personal freedom and dignity, many specific therapies have employed unusual and unique approaches. As a result, some methods employing physical or social restriction, aversive procedures, and psychotropic drugs are controversial.

SIB is a symptom in several rare genetic disorders, the best known being Lesch-Nyhan disease, which is caused by an enzyme deficiency. With respect to most nongenetic cases of SIB and other destructive behaviors, the specific initiating cause is seldom known. A number of theories ascribe the onset, development, and maintenance of destructive behaviors to a variety of causative factors. These include neuroanatomical, physiological, and chemical abnormalities; social and environmental deprivation; need for stimulation due to sensory deficits; and operant and respondent learning. In most cases it is difficult to determine the exact initiating causes due to a lack of pertinent longitudinal and diagnostic information. It is likely, however, that many of these theories are valid because for most individuals, with respect to conditions supporting the development and maintenance of the destructive behavior, multiple causes seem to be the rule.

Some aspects of destructive behavior are seen in most children at specific periods of development. For the person with a developmental disability, destructive behaviors, if left untreated, can persist for years or even decades and are often life threatening. Specific destructive behaviors do vary by age, sex, cognitive level, adaptive functional level, and residential environment. SIB is more prevalent in persons with severe-to-profound rather than mild-to-moderate retardation, and destructive behaviors in general are more prevalent in persons living in institutions compared with those in community residences.

Destructive behaviors result in five classes of consequences - physical, social, emotional, educational, and economic. By definition, destructive behavior carries the risk of serious bodily injury, which may result in permanent damage either to the person who enacts the behavior or to others. Fortunately, because of intervention, death is rarely a consequence. However, the wide range of SIB actions can result in pain, tissue and organ damage, infections, body disfigurement, and poisoning due to ingestion of toxic substances. Aggressive behaviors such as spitting, hair pulling, scratching, hitting, pinching, and kicking can cause pain as well as physical and emotional injury to both the giver and receiver of such aggression.

All forms of destructive behavior have serious social and personal consequences for people with developmental disabilities. These include isolation, resulting in separation from family members and peers, and deprivation of opportunities to develop normal social relationships. The negative attitudes developed by those witnessing destructive acts further hinder development of harmonious and effective interpersonal relationships. Of special importance, destructive behaviors distort, or render more negative, community attitudes toward the larger group of persons with disabilities, most of whom exhibit no destructive behaviors. Social isolation may also result in the development of personality disorders, especially those involving affective, explosive, and hysterical behaviors.

The very nature of destructive behaviors, coupled with isolation from others, can seriously limit educational opportunities. When a caregiver's total activities must be directed toward managing destructive behavior, there may be no time available for the intervention and programming necessary to produce adaptive and recreational behaviors. The requirement to provide those with destructive behaviors the least restrictive educational environments possible may involve considerable time and expense. This in turn may adversely affect the total system of education for the larger group of persons with developmental disabilities.

The referral for special care or institutionalization is caused more by the occurrence of destructive behaviors among persons with developmental disabilities than by the individual's level of impairment. The additional staff required to work effectively with destructive behaviors greatly increases the cost to society. Persons with severe SIB may require care costing $100,000 or more per year. The legal and ethical requirements for reasonable care and safe conditions; freedom from bodily restraints; and adequate nutrition, medical care, housing, training, or habilitation apply to all persons with developmental disabilities, with and without destructive behaviors. This means that at a minimum states must provide each individual the benefit of an intervention program and freedom from undue restraint. The economic costs of these provisions for individuals with destructive behaviors cannot be determined precisely, but these outlays certainly add several billion dollars per year to total public expenditures for persons with developmental disabilities.

In addition, there are a number of indirect costs associated with destructive behaviors. These include the costs of not being able to participate in supported or competitive employment, which results in the need for income maintenance or other subsidies. Also included are the costs to families trying to maintain at home a family member with destructive behavior. The latter includes significant lost economic opportunities by precluding the employment of family members who must stay at home to care for and to protect their relative with destructive behavior.

What are the approaches to prevent, treat, and manage these behaviors?

Several approaches have been utilized in the prevention, treatment, and management of destructive behaviors in persons with developmental disabilities. On the basis of their formal features these approaches can be categorized as behavioral, educational, ecological, and pharmacological.

Behavioral Methods

On the basis of their performance effects, behavioral approaches can be subdivided into two general categories. Behavior reduction approaches are designed to reduce the incidence of a particular destructive behavior by providing an environmental change contingent on the occurrence of the behavior. In all cases a procedure or consequence is applied immediately following the display of the target behavior. Behavior enhancement approaches are designed to reduce the incidence of destructive behaviors by making socially desirable responses more probable, that is, by reinforcing more appropriate competing or alternative behaviors rather than by suppressing the destructive behaviors directly.

In the contemporary application of behavior reduction treatments, several different procedural consequences are utilized, including brief (fraction of a second) faradic shock delivered to the skin; a disagreeable tasting substance placed in the subject's mouth; mouth washing; oral hygiene; air, water mist, or ammonia salts placed briefly under a person's nose; or tickling.

Other behavior reduction procedures involve:

Overcorrection, in which the environment effects of the undesirable behavior are corrected and desirable behaviors are thoroughly rehearsed or practiced (e.g. cleaning up their own clutter and the clutter made by others).
Contingent restraint and protective intervention (restrictive jackets, helmets, etc.).
Facial screening (temporarily blocking the field of vision).
Time out (a condition in which positive reinforcement cannot be obtained).
Response cost (loss of tokens, points, or their equivalents.
Verbal reprimand.
Extinction (removal of the reinforcement that is maintaining the destructive behavior).

Behavior enhancement approaches include two broad classes of intervention: differential reinforcement of other behavior (DRO) and differential reinforcement of incompatible behavior (DRI).

When DRO is applied one is rewarded for not engaging in the undesirable behavior. The procedure works in the following manner: First, a target behavior is identified and an appropriate positive reinforcer is selected. Next, a brief time interval is specified. The individual receives the positive reinforcement for anything he or she is doing after this interval has elapsed, provided that there is no display of the target destructive behavior during that time. As reinforced responses become more frequent over successive DRO intervals, they compete with and eventually replace the undesirable target behavior. In DRI the issue is one of replacing the undesirable behavior with something better. In practice, an alternative behavior is chosen that is physically incompatible with the problem behavior; increasing the frequency of this incompatible behavior will necessarily produce a decrease in the undesirable behavior. An intermittent schedule of reinforcement is selected. If at the end of each time interval the individual is engaging in the incompatible behavior, the individual receives reinforcement.

Educational/Skills Acquisition Approaches

In the educational or skills acquisition approaches to treatment, the responses that are reinforced are those believed to enhance the individual's ability to perform competently in the daily environment. Here the emphasis is on teaching new behaviors that are likely to increase an individual's social competence. Among the skills acquisition training approaches are:

	Compliance training (to respond correctly to a variety of verbal or nonverbal commands).
	Self-management training (self-monitoring, self-evaluation, and self-reinforcement).
	Communication skills training. Some destructive behaviors can be viewed as nonverbal forms of communication; hence, if new forms of requesting (e.g., signing) are taught, these will replace the destructive behavior and enhance the social interactions of the individual.
	Functional independence training. Training in a variety of socially useful behaviors, including leisure skills, vocational skills, and self-help skills, corrects deficits presumed to trigger destructive behavior.

An essential step in the use of educational/skills acquisition approaches involves a functional analysis of existing behavioral patterns. The acquisition of compliance, self-management, communication, and greater independence (e.g. leisure or self-help skills) represents a genuine educational gain for the individual; indeed, this may have greater long-term significance than the mere elimination of destructive behaviors.

Ecological Approaches and Stimulus-Based Treatments

In the course of everyday living, numerous events may transpire that alter the stimulus set for a given individual (e.g. residential and/or staffing changes). Striking behavioral changes may follow (e.g., SIB may flare up or, alternatively, may subside for longer or shorter intervals). This should be distinguished from the changes that are introduced as a result of a careful functional analysis of behavior; under such circumstances specific changes in setting events and ecological milieu are prescribed and put into effect to achieve prestated goals. This literature concerning ecological approaches to the treatment of destructive behaviors in persons with developmental disabilities is relatively new.

Stimulus-based treatment approaches described in the literature take various forms. Situations and settings that are correlated with low rates of problem behaviors can be scheduled more frequently into the individual's day. Stimuli that most often evoke destructive behaviors can be modified to reduce the triggering of the problem behavior.

Pharmacological Methods

The psychopharmacologic agents used to reduce destructive behavior, directly or indirectly, include neuroleptics (e.g., chlorpromazine, thioridazine, haloperidol), sedative-hypnotics (barbiturates), stimulants (d-amphetamine, methylphenidate), antianxiety drugs (benzodiazepines), antidepressants and mood stabilizers (imipramine, lithium), anticonvulsants (carbamazepine, phenytoin, phenobarbital), antihypertensives (beta-adrenergic blocking agents such as propranolol and pindolol), and opiate antagonists (naloxone, naltrexone). The drugs most frequently prescribed specifically for destructive behavior are the neuroleptics, with thioridazine the most popular.

The prevalence of drug treatment for persons with development disabilities is disturbingly high. Average rates of psychotropic drug use, primarily neuroleptic drugs, range from about 30 percent to 50 percent in both nursing homes and state-operated mental retardation institutions, and from about 26 percent to 36 percent in community-based residential facilities. These are usually point prevalence figures (measured at a single point in time); the lifetime prevalence rate (percentage of individuals receiving these drugs at some time during their lives) is much higher.

Destructive behaviors figure prominently in prompting treatment with psychotropics. The most prominent symptoms evoking such treatment for persons with mental retardation in residential facilities are aggressiveness, hyperactivity, self-injury, excitability, and screaming.

What is the evidence that these approaches, alone or in combination, eliminate or reduce destructive behaviors?

The following discussion of treatment efficacy is based on peer-reviewed, published research that reported empirical data derived from the application of controlled experimental designs. An evaluation of that evidence is complicated by a number of considerations. Research studies vary in terms of sample size and population (e.g., level of functioning of subjects), the setting in which the study was conducted (e.g., institution, school), the nature of the reported inquiry (e.g., single subject or group experimental design),, the rapidity and durability of the reported outcomes, and the timeframe within which the studies were carried out.

A considerable portion of the research literature on treatment approaches involves multiple interventions that do not experimentally isolate the contribution of each of the several interventions applied. To provide a firm scientific basis for our report, we focused on those studies in which it was possible to discern the direct effects of single treatment modalities, but the entire research literature was carefully reviewed.

Behavioral, Educational, and Ecological Approaches
Efficacy of Treatment

The majority of the studies of behavior reduction approaches were conducted from the 1960's to the early 1980's and report findings for treatments used primarily with individuals with severe and profound levels of mental retardation in institutional settings. To reduce the likelihood of the behavior recurring, various researchers employed a range of stimuli that were delivered contingent on occurrence of the targeted destructive behaviors. The number of studies available is relatively small, but enough data are forthcoming to provide a basis for reasonably firm conclusions. Using a criterion of 90-percent reduction of the target behavior from baseline measures, the behavior reduction interventions appeared to be effective in some individuals in suppressing destructive behaviors, particularly SIB.

Behavior enhancement approaches were applied in a variety of settings with subjects whose ages and levels of developmental disability ranged widely, including individuals with severe and profound levels of mental retardation in institutional settings. There is a paucity of research on these approaches; however, using the same criterion of 90-percent reduction of target behavior from baseline levels, DRO and DRI appear to be effective in treating some individuals.

The literature on educational/skills acquisition and stimulus-based approaches is in its infancy. Few published studies were available for review, in part because these techniques are rarely applied as single treatments. The available data show promising results for persons with aggressive behaviors and SIB.

Rapidity of Effects

In a majority of the studies of behavioral reduction interventions, maximum (>90 percent) suppression effects were seen in 1 to 10 days.

Rapidity of effect is not the primary goal of either behavior enhancement procedures or educational or ecological treatments. In these interventions the emphasis is on increasing the probability that socially desirable behaviors will occur and will eventually replace problem behaviors. This process involves the strengthening of alternative responses, which usually takes time and thus delays the effects of the treatment. Although the use of behavior enhancement and educational or ecological treatments, particularly those utilizing stimulus change, can produce their effects quickly, it is not speed of effect so much as long-term change that is the central issue.

Durability of Effects

For the most part, followup studies of subjects treated with behavior reduction approaches have revealed that the suppression effect can endure for months and, indeed, persist for up to 2 years after the intervention has been discontinued. The extent to which other environmental factors contribute to this durable change is unclear.

Although followup studies of behavior enhancement, educational/skills acquisition, and ecological approaches are rare, they do demonstrate maintenance effects of 9 months or more, providing evidence of long-term gains.

Pharmacological Approaches

Neuroleptic drugs are widely employed in managing persons with developmental disabilities and destructive behaviors but are rarely prescribed with the specific therapeutic intent of treating a psychiatric condition. Instead, they are usually prescribed for individuals with developmental disabilities because they can suppress motor activity (which, in turn, will incidentally diminish aggressive behavior). There is some evidence that neuroleptics are beneficial in treating some persons with developmental disabilities displaying aggressive behavior; however, insofar as reported data bear on this issue, no solid conclusions can be drawn as to the usefulness of these neuroleptic drugs specifically for SIB. Suprisingly, no study of the most popular neuroleptic drug, thioridazine, has ever been published that explicitly measures self-injury and meets the minimum requiremnts for a satisfactory clinical trial. The situation is equally unsatisfactory for chlorpromazine and haloperidol. Particularly troubling is the amount of variability in response found among individuals studied with the various neuroleptic drugs.

The major neuroleptic drugs differ in the extent to which they produce untoward side effects. Such side effects include a mild parkinsonian syndrome, neuroleptic malignant syndrome, and, if treatment is prolonged, tardive dyskinesia. In therapeutic doses, haloperidol is more likely than thioridazine or chlorpromazine to produce extrapyramidal side effects (including tardive dyskinesia).

The sedative-hypnotics such as barbiturates and chloral hydrate were used many years ago to control violent behavior and were superseded by meprobamate and the benzodiazepines (chlordiazepoxide and diazepam). All are generally considered to be ineffective for SIB, sometimes actually worsening the behavior they were meant to ameliorate.

At best, the psychostimulants such as methylphenidate and d-amphetamine are of limited utility in persons with severe and profound mental retardation. Tricyclic antidepressants have largely replaced the monoamine oxidase inhibitors in the general treatment of depression. Their usefulness in the treatment of disruptive behavior in this population is not supported by the few clinical reports except in the presence of a clearly identified affective disorder. Theoretically, serotonin reuptake inhibitors such as fluoxitene may be useful in treating agitated behavior in patients with a compulsion for sameness, as in autism. Clinical data are lacking for its utility with other persons with developmental disabilities.

Because of its beneficial effects in treating bipolar affective disorders in persons who are not developmentally disabled, lithium carbonate has been used to manage aggressive behavior in persons with developmental disabilities. A few studies with a small number of subjects suggest beneficial effects, particularly when depression and restlessness or tantrums and aggressive behavior are present. If an accurate diagnosis of endogenous depression or bipolar affective disorder can be made, the use of lithium is frequently efficacious.

Anticonvulsants, widely used in the treatment of seizure disorders, are reported to have favorable effects on behavior. Because these effects occur in persons with and without epilepsy, the clinical improvement does not appear to be due merely to better seizure control. In particular, carbamazepine has been shown to have psychotropic effects in addition to its anticonvulsant properties. Unfortunately, clinical trials are too sparse to warrant any general conclusions regarding its efficacy in controlling assaultive or self-injurious behavior.

Antihypertensives have been used in small numbers of subjects with varying results. Beta-adrenergic blocking agents such as propranolol and pindolol have been reported to reduce rage-related reactions under some circumstances, but no satisfactory clinical trials in persons with developmental disabilities have been reported.

Opiate antagonists show promise of being important for SIB treatment. Basic research in neurochemistry and neuropharmacology may have substantial influence on the development of drugs that specifically alter self-injurious behaviors. Much of the current work on possible biochemical mechanisms involved in SIB stems from attempts to understand the neurochemistry of Lesch-Nyhan disease, with particular emphasis on dopamine neurotransmission. Other recent developments concerning the neuropharmacology and behavioral pharmacology of endogenous opiate-like polypeptides (opiods) within the brain have provoked great interest in another hypothesis that may further the understanding of the origin and maintenance of SIB. Within this framework, such behavior can be characterized as "addictive," that is, it may be maintained by pain-elicited release of endogenous opiods. This theory remains attractive but unproven; clinical studies of opiate antagonists such as naloxone and naltrexone, which block the effects of endogenous opiates, have yielded conflicting results.

What are the risks and benefits associated with the use of these approaches for the individual, family, and community?

The terms "benefits" and "risks" cover more than the elimination or exacerbation of the targeted behavior in persons with destructive behavior. Risks in this context refer to the probability and magnitude of harm; benefits refer to the probability and extent of gain in well-being. Risks and benefits affect individuals, families, and communities and thus can be assessed across multiple domains (e.g., physical, psychological, and developmental changes in the individual; family stress; social, economic, and legal impacts for the community). Durability and generalizability of response are both necessary considerations in the assessment of risks and benefits. In the course of assessing benefits and risks, the effectiveness of treatments in facilitating other educational, behavioral, and social interventions must also be considered.

The scientific literature is generally silent on most issues of risks and benefits with respect to specific behavioral interventions for persons with developmental disabilities with destructive behaviors. The literature on pharmacologic agents is restricted to efficacy and toxic effects on the individual receiving the medication. The literature on behavioral interventions is restricted primarily to suppression of target behavior and to durability and generalizability of effect. Limited empirical literature was found on the familial and/or societal impacts of the use of either pharmacologic or behavioral interventions for persons with developmental disabilities exhibiting destructive behaviors. However, there has been considerable public debate and scrutiny by a variety of advocacy organizations, professional associations, and governmental bodies of the risks and benefits of the various treatment approaches for destructive behavior among persons with developmental disabilities. The focus of the debate and scrutiny has been primarily on moral, social, and legal implications of the use of specific interventions.

In treating persons with developmental disabilities who exhibit serious destructive behavior, the determination of risks and benefits is far more complex than in most disorders. Strict criteria for benefit can be readily established in the experimental setting; however, there is no single, easily measured endpoint in the clinical setting. Greater freedom from self-injury or greater saftey for others is not sufficient, if these results are obtained at the expense of the individual's ability to function as optimally as possible within home, work, or school settings. The probability and degree of loss or gain of the individual's capacity to be independent, to learn, to work, or to play must be considered in the risk/benefit analysis. Traditionally risks or benefits have been defined solely in terms of the effect of the intervention on the targeted behavior. We concur with the following array of outcome measures: (1) protection of health and safety, (2) reduction of destructive behaviors, (3) increase in adaptive behaviors, and (4) development of appropriate levels of physical integration, social integration, and variety in activity patterns.

Rigorous scientific validation of the benefits of pharmacologic intervention among persons with developmental disabilities with destructive behaviors is extremely limited. The problems in the evaluation of the benefit of drugs for the control of destructive behavior arise from a multiplicity of factors, including: (1) problems in accurate diagnosis (because destructive behavior may occur in a wide variety of disorders); (2) problems resulting from the large number of variables (e.g., differences in participants, drug design, environmental factors, and measurement); (3) problems in identifying social consequences of treatment (e.g., altered learning ability); and (4) problems of small sample size. Ethical and operational problems arise in double-blind design and placebo use; all too often side effects such as somnolence may identify recipients of active medication in contrast to recipient of placebos - and the double-blind elements in the study is nullified.

In addition, the risk of harm from medication is also difficult to assess because there are few controlled protocols, including detailed laboratory studies. Harmful effects may be delayed for months and even years. The drug itself may mask its own harmful side effects, for example, tardive dyskinesia associated with neuroleptic drugs. Undesirable behavior may be reduced, but at the expense of diminished learning and delayed development. Despite all of these limitations, a body of somewhat reliable evidence does exist in the literature. Common to all of these reports is the inevitable problem that the available evidence may be skewed. In the nature of things, positive (beneficial) effects are more likely to be submitted and accepted for publication than inconclusive results. Likewise, toxic manifestations are more likely to be reported than evidence of no harmful side effects. Therefore, conclusions from the literature must be regarded with some degree of caution.

A beneficiary of psychotropic drug treatment may be family members or other caretakers, whose task may be reduced substantially if serious destructive behavior is reduced or eliminated (even if accomplished principally through sedation). In some instances, drug treatment may be resisted by families because it is seen as addictive, debilitating, and having serious side effects. Families require counseling in regard to appropriate use and side effects of drug treatment. It is essential that decisions regarding drug treatment be made for the benefit of persons with developmental disabilities and not for the convience of the caretaker. On the other hand, when they are genuinely effective, psychotropic drugs may ease the burdens of care, make family life less stressful, and improve the social image of persons with disabilities in their communities.

Liability for administration of drugs by nonmedical personnel is a major service delivery problem in the community. In agency settings, inadequate supervision by physicians who may rarely see the individual patient is a significant problem. These physicians may be generally unfamiliar with the needs of persons with developmental disabilities. One risk stems from the community and professional belief that drug therapy can substitute for appropriate individualized programming aimed at the elimination of undesirable behavior and at the development of improved social functioning.

Research on behavioral, educational, and ecological interventions provides evidence for the effectiveness of these approaches on the suppression of destructive behavior and durability of response. Few studies, however, systematically examine collateral effects on the individual, family, or community. Anecdotally, investigators often report positive side effects following the suppression of the destructive behavior (e.g., increased school and community participation, enhanced family relationships); indeed, such positive collateral effects are reported significantly more often than negative side effects.

Negative side effects of behavioral interventions also have been reported anecdotally for both behavior enhancement and behavior reduction approaches. For example, some interventions have been found to lead to the emergence of other forms of self-injury or other forms or undesirable behavior. In addition, relapse following discontinuation of treatment may lead to more severe or more intractable forms of destructive behavior. Additional side effects that have been reported include decreased social behavior, increased aggression, and increased stereotypies. Less visible side effects associated with behavior reduction approaches include the potential for abuse in the application of these procedures, the psychological effects on staff, and, most important, the negative and demeaning social image that the use of some of these procedures conveys to the general public about persons with developmental disabilities.

A major controversy has erupted in the last decade regarding the use of behavior reduction approaches (also called aversive treatments). The controversy includes both the credibility of the scientific evidence regarding the effectiveness of such techniques and the ethical aspects, legal issues, and social acceptability of these procedures. A bitter and acrimonious debate has developed among families, advocates, professionals, organizations, and government agencies. Additional research is urgently needed on the risks and benefits of the use of various behavioral as well as psychopharmacologic interventions for persons with developmental disabilities with destructive behaviors.

Based on the answers to the above questions and taking into account the behavior; the diagnosis and functional level of the individual; possible side effects on the individual, family, and community; the treatment setting; and other factors, what recommendations can be made at present regarding the use of the different approaches?

The panel believes that although single treatment modalities are demonstrably effective, the most successful approaches are likely to involve multiple elements of therapy, environment, and education. Depending on the severity of the destructive behavior, therapy may require methods for enhancing desired behaviors; for producing changes in the social, physical, and educational environments in which the individual lives; and for reducing or eliminating destructive behaviors. Regardless of therapeutic approach chosen, informed consent must be obtained.

Treatment should be based on an analysis of the biological and environmental conditions that may maintain an individual's destructive behaviors. The results of this analysis should guide the design of the treatment intervention. Such an analysis should include identification of medical and psychiatric conditions that may contribute to the problem, environmental situations that may evoke the destructive behavior, and the consequences and skill deficits that may be maintaining the destructive behaviors.

Behavior reduction procedures should be selected for their rapid effectiveness only if the exigencies of the clinical situation require short-term use of such restrictive interventions and only after appropriate review and informed consent are obtained. It is recognized, however, that behavior reduction procedures make little or no direct contribution to providing constructive alternatives to the destructive behaviors targeted for elimination. Thus, the interventions should be used only if they are incorporated in the context of a comprehensive and individualized behavior enhancement treatment package.

Psychopharmacologic agents should be used as a specific treatment for individuals with developmental disabilities who have identified psychiatric syndromes. In crisis situations, medications may also be prescribed for the symptomatic relief of agitation or for temporary control of dangerous behavior. The short-term use of behaviorally active drugs may be justified to gain a window of opportunity for the introduction of more specific behavioral and educational treatments; as a rule, this does not require prolonged administration of these agents. These agents should never be administered for extended periods as the only way of controlling disturbed behavior of unknown etiology. The selection and continued use of pharmacological agents should be based on objective evidence of beneficial behavioral change and acceptable levels of undesired side effects.

The goal of all treatment approaches should be to maximize the potential and adaptive abilities of all persons with developmental disabilities with destructive behaviors so that they can live in as culturally normal an environment as possible under conditions of physical and psychological well-being. The primary objective of treatment must be the development and implementation of individualized comprehensive behavior enhancement strategies that protect the individual's health and safety and promote the opportunity to develop appropriate social and cognitive skills.

What research is needed on approaches for preventing, treating, and managing destructive behaviors in persons with developmental disabilities?

The consensus development panel examined current knowledge about the extent and nature of destructive behaviors in persons with developmental disabilities. Treatment approaches and their effectiveness were reviewed. Although information in this area is increasing, serious and extensive gaps exist in our knowledge base. New resources must be allocated for research on all treatment modalities. Specifically, the panel recommends research on behavior enhancement procedures and educational (skills acquisition) and ecological approaches. Basic research is also needed on behavior and on the brain and its development in relation to the causes of destructive behaviors. The cooperation of investigators from many relevant disciplines and the rigorous application of appropriate research principles are required.

The panel also recommends the following topics for future research.

Taxonomic and Epidemiological Studies

	Development of a taxonomy of destructive behaviors for research and diagnostic purposes.
	Studies of the incidence and prevalence of destructive behaviors and of the frequency and characteristics of the various treatment modalities used in institutions, schools, community settings, and homes. Such studies should enumerate findings on a state-by-state and a national basis.
	Studies of the impact of destructive behaviors on families and communities.
	Studies of the mortality and morbidity of various forms of SIB.
	Investigations into the relationship between psychiatric diagnosis and destructive behaviors in persons with developmental disabilities.

Basic Research

	Clinical and experimental studies of the origins, natural history, and ecology of individuals at risk for destructive behaviors.
	Studies of the biological bases of destructive behaviors that incorporate applications of the latest technologies in neuroimaging, electrophysiology, and neurochemistry.

Treatment

	Multicenter interdisciplinary studies using common measures and comparing alternative treatments and their components with regard to the degree, rapidity, and durability of desired effects.
	Research on the effectiveness of all treatment modalities.
	Research on clinical outcome measures, including the development of appropriate instruments reflecting the degree to which individuals are socially integrated into home, school, employment, and community life.
	Research on the development of more effective pharmacologic agents.

Conclusions and Recommendations

	Destructive behavior among persons with developmental disabilities presents a unique therapeutic and human challenge. The estimated cost of treatment of these persons exceeds $3 billion annually.
	All forms of destructive behavior have serious consequences for people with developmental disabilities and for their families, which can seriously limit their life opportunities.
	Most successful approaches to treatment are likely to involve multiple elements of therapy (behavioral and psychopharmacologic), environmental change, and education.
	Treatment methods may require techniques for enhancing desired behaviors; for producing changes in the social, physical, and educational environments; and for reducing or eliminating destructive behaviors.
	Treatments should be based on an analysis of medical and psychiatric conditions, environmental situations, consequences, and skill deficits. In the application of any of these treatments, an analysis of existing behavioral patterns.
	The prevalence of drug treatment in persons with developmental disabilities is disturbingly high and lacks robust scientific validation. The use of pharmacologic agents should be restricted to persons with identified psychiatric syndromes or be designed to facilitate the establishment of behavioral, interpersonal, or educational therapies.
	Behavior reduction procedures should be selected for their rapid effectiveness only if the exigencies of the clinical situation require such restrictive interventions and only after appropriate review. These interventions should only be used in the context of a comprehensive and individualized behavior enhancement treatment package.
	New resources must be allocated for future research on all treatment modalities, particularly behavior enhancement procedures and educational (skills acquisition) and ecological approaches.
	Newer pharmacologic approaches merit intensive investigation. Through basic and clinical research, the potential exists to develop drugs that could operate directly and specifically on eliminating self-injurious behavior.
	Research is needed on the origins, natural history, and ecology of destructive behaviors among persons with developmental disabilities.

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U.S. Department of Health and Human Services
Public Health Service
National Institutes of Health
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Bethesda, MD 20892

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	National Institute of Child Health and Human Development, NIH.
	Office of Medical Applications of Research, NIH.
	National Institute of Mental Health, ADAMHA.
	National Institute of Neurological Disorders and Stroke, NIH.
	Administration on Developmental Disabilities.
	Health Resources and Services Administration, DHHS.
	U.S. Department of Education.
	President's Committee on Mental Retardation.