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Mental retardation is characterized by low intelligence and deficits in adaptive skills that are observed before the age of 18. The majority of people with mental retardation are mentally healthy and free of serious behavior problems, although the prevalence of psychiatric disorders is higher than in the general population. This entry discusses the factors that contribute to the risk of behavior problems and emotional disorders, as well as the assessment, treatment, and implications of mental health problems among persons with mental retardation.
OUTLINE
I. Definition of Mental Retardation
A. Evolution of the Definition of Mental Retardation
B. Sociological Perspective on Deviant Behavior and Mental Retardation
II. Psychopathology and Behavior Problems
A. Specific Psychiatric Disorders with Mental Retardation
1. Affective Disorders
2. Schizophrenia
3. Autism
4. Anxiety Disorders
5. Phobias
B. Estimating Prevalence of Psychopathology
1. Assessment
2. Sampling Bias
C. Relationships with Age
D. Relationships with Intellectual Level
E. Relationships with Gender
F. Relationships with Etiology of Mental Retardation
G. Behavior Problems Distinguished from Psychiatric Disorders
III. Assessment of Mental Health
A. Applicability of Taxonomies Used for the General Population
B. Consideration of Quality and Reliability of Mental Health Information
1. Multimethod Approach to Assessment
2. Complications Caused by Communication Deficits
3. Effect of Behavior on IQ Test Performance
C. Diagnostic Overshadowing
D. Measures Developed for Individuals with Mental Retardation
1. Clinical Dimensions across Instruments
2. Validity of Instruments
E. New Evaluation Techniques
IV. Treatment and Intervention
A. Historical Perspective on the Treatment of Behavior Disorders
B. Relationship of Causal Factors to Treatment Methods
1. Causal Factors
a. Low Intelligence and Environmental Factors
b. Developmental Explanations
c. Behavioral Theory
d. Genetic Links to Behavior
e. Family Influences
f. The “New Morbidity”
g. Consideration of Multiple Causes: Self-Injury As an Example
2. Treatment
a. Matching Treatment to Genetic Causes of Mental Retardation
b. Behavior Therapies
c. Ethics of Aversive Interventions
d. Psychopharmacological Interventions
e. Skill Development
V. Promotion of Mental Health
A. Prevention and the New Morbidity
B. Genetic Mapping
C. Early Intervention Programs
VI. Implications of Mental Health Considerations
A. Cost of Mental Health Care
B. Residential Placement
C. Family Issues
D. Educational Implications
1. Guarantee of Public Education
2. Written Safeguards in Schools
E. Service Delivery Systems: Two Handicaps–Two Service Delivery Systems
F. Legal Issues
VII. Bibliography
I. DEFINITION OF MENTAL RETARDATION
According to the most recent (1992) definition of the American Association on Mental Retardation (AAMR), people with mental retardation are characterized by significantly subaverage intellectual functioning (IQs lower than 70 or 75) and by concurrent limitations in two or more adaptive skill areas. Mental retardation is defined as a fundamental difficulty in learning (intellect) and an ensuing difficulty in performing daily life skills (adaptation). Consistent with a developmental perspective, mental retardation is manifested before age 18. Although certain aspects of this new definition depart from previous conceptions of mental retardation, the dual criteria of low IQ and deficits in adaptive behavior have been critical elements of most definitions for many years. Defining mental retardation in terms of adaptive behavior deficits is especially important when considering the presence of co-occurring mental health problems.
A. Evolution of the Definition of Mental Retardation
There has never been a universal consensus as to what mental retardation actually is. Moreover, at any time in history, the definition of mental retardation has reflected the current status of scientific knowledge and prevailing views on social issues related to mental retardation. From the turn of the century until the first formal AAMR definition in 1959, mental retardation was widely believed to be a biologically based condition of the central nervous system, existing from birth, that was incurable and probably irremediable. The 1959 AAMR definition was less restrictive, focusing on current functioning rather than constitutionality, and not explicitly stating that mental retardation was incurable.
The assumption of a theoretically normal distribution of intelligence suggests that most people will have IQs that are closer to the mean score of 100 (i.e., scores close to the cutoff) and that the number of people who are expected to have more severe forms of mental retardation decreases as IQs deviate farther from the mean. Thus, mild retardation comprises the largest group of people with mental retardation.
The arbitrariness of the concept of mental retardation is illustrated by the AAMR definitional change in 1973, which moved the upper IQ limit from approximately 85 (one standard deviation from the mean of 100) down to 70 (two standard deviations from the mean). With this change, approximately 13% of the population “lost” their potential membership in the mental retardation category. For individuals with severe forms of mental retardation, these definitional differences were irrelevant; they would probably have been identified no matter what definition was used. But, for those with IQs between about 70 and 85, who had been previously identified as having mental retardation, this decision changed their diagnosis.
Today, the majority of children with mild forms of retardation do not have known pathology (biologic origins). They are more likely to come from adverse economic and living situations that contain risk factors, such as poor nutrition, poor medical care, low motivation for personal achievement, and parents who have below average IQs. For some children, these factors will result in depressed intellectual functioning, poor development of adaptive skills, and a diagnosis of retardation.
Most formal organizations (e.g., American Psychiatric Association, World Health Organization, state and federal agencies) have historically used approximations of the AAMR definitions in their definitions or eligibility criteria for mental retardation. But because the 1992 AAMR definition and classification system is still rather new and has introduced some conceptual shifts, its long-term impact on the definitional criteria used by other organizations is unknown.
B. Sociological Perspective on Deviant Behavior and Mental Retardation
For those people whose IQs are close to the cutoff, adaptive functioning is the key determinant in their diagnosis. It is the lack of adaptive competence, rather than low IQ, that usually leads to referral for evaluation and diagnosis. Thus, many individuals with IQs below the cutoff will never be referred for evaluation if their levels of adaptive competence do not draw attention. The measurement of adaptive functioning is subjective, as it involves a determination of what constitutes “normal” or competent behavior within specific environments. From a sociological perspective, then, the values and expectations of each society determine how mental retardation is to be defined, that is, by identifying the types and degree of deviant behavior that is not tolerated. This suggests that a diagnosis of mental retardation is assigned when an individual with subaverage intelligence deviates too far from the behavior standards dictated by societal norms. Thus, two people with the same IQ score and the same repertoire of adaptive competencies could presumably end up with different diagnostic outcomes (with or without mental retardation) if their environments produce different demands and behavioral expectations.
C. Mental Retardation Distinguished from Mental Illness
In the earliest civilizations mental retardation was not differentiated from other handicapping conditions, and it was common for adults with mental retardation to be institutionalized with people with mental illness. Both groups were believed to be insensitive to cold, heat, hunger, and pain, thus justifying the harsh treatment they often received in their confinement. Later attempts to distinguish between mental retardation and mental illness included Paracelsus’s definition during the Renaissance period and Esquirol’s classification system in the early nineteenth century, which designated mental retardation as amentia and mental illness as dementia. Despite the fact that mental retardation was scientifically acknowledged in the early 1800s to be an important social problem distinct from mental illness, many people today still do not recognize that the majority of persons with mental retardation are mentally healthy and are free of significant behavioral problems.
The distinction that eventually was made, to associate mental retardation with low intelligence and to associate mental illness with emotional disorders, has been identified as one explanation for current tendencies toward dismissing the possible presence of behavior disturbance among persons with mental retardation. In other words, once it was clear that mental retardation was not synonymous with mental illness, the pendulum swung back such that these conditions were not even expected to co-occur.
D. Dual Diagnosis
The term dual diagnosis is now applied to persons who have intellectual deficits (mental retardation) along with emotional impairment (psychiatric disorders). As noted previously, people with mental retardation experience difficulty functioning independently in their environments but they do not necessarily have psychological disturbances. When psychiatric disorders are present, they are usually of the same types and are diagnosed by the same criteria as for persons of normal intelligence. The dual diagnosis term grew out of the recognition that individuals with both conditions present unique needs to mental retardation and mental health service systems.
Professionals have established the fact that the presence of these two conditions creates a complex set of issues that may complicate the diagnostic process and may require unique methods of treatment. The utility of the dual diagnosis term has been questioned by some clinicians who believe it adds another stigmatizing label to persons who already experience difficulties obtaining services from agencies that resist taking responsibility for them. Others suggest this reflects problems with the service systems, rather than with labels or assessment per se.
II. PSYCHOPATHOLOGY AND BEHAVIOR PROBLEMS
Although mental retardation and psychopathology are believed to be functionally independent, studies of the prevalence of psychiatric disorders among individuals with mental retardation have shown, almost without exception, rates that are much higher than those found in the general population. The rates reported in the literature range from less than 10% to more than 80% for persons with mental retardation, depending on methods of sampling, eligibility criteria, and types of assessment. The two largest epidemiological population studies conducted in the Isle of Wight, Wales (Rutter & Graham, 1970) and in Aberdeen, Scotland (Koller, Richardson, Katz, & McLaren, 1982) concluded that the prevalence of psychiatric disorders among children with mental retardation was about four times greater than in the general population. The prevalence rates of psychiatric disorders for children with normal intelligence in those studies ranged from 5 to 10%.
A. Specific Psychiatric Disorders with Mental Retardation
Although the incidence of psychiatric disturbance has been found to be higher among persons with mental retardation, the literature consistently affirms that the majority of symptoms do not differ in kind from people without mental retardation who are referred for psychiatric evaluation.
1. Affective Disorders
Affective disorders, including depressive and bipolar disorders, have been found to occur with much greater frequency among children and adults with mental retardation than in the general population. Contrary to earlier hypotheses that people with mental retardation are devoid of feelings, the results of some studies suggest that adults with mild mental retardation appear to experience even higher rates of depression than their peers without mental retardation.
2. Schizophrenia
Schizophrenia has been found to be present in about 2 to 39/0 of persons with mental retardation, a prevalence that is much higher than in the nonretarded population. The symptoms of schizophrenia are generally similar across groups, although they may be simpler in form among persons with mental retardation.
3. Autism
It has been estimated that 75% of children with autism will perform at a level within the regarded range throughout their lives; however, less than 3 % of persons with mental retardation have autistic behavior. Contrary to early theories that autism was caused by “cold” parenting styles, a variety of biological problems are now thought to explain the central nervous system dysfunction that characterizes this disorder.
4. Anxiety Disorders
Anxiety disorders have received less attention than other psychiatric disturbances among persons with mental retardation. Although prevalence estimates are scarce, several authors have reported higher rates of anxiety among persons with mental retardation than in the general population. A 22-year longitudinal population study conducted in Aberdeen, Scotland, for example, found that more than one fourth of the children exhibited problems with nerves and anxiety by early adulthood. No differences were observed between boys and girls, but a higher prevalence was found among those with more severe levels of retardation.
5. Phobias
Studies have shown that persons with and without mental retardation experience the same types of fears. Several studies suggest that mental age is a factor in comparisons of fears across these groups, where fears of older people with mental retardation tend to be more similar to fears of younger nonretarded people. Social phobias are expected to be high among persons with mental retardation; in the presence of cognitive limitations, social skill deficits are common and lead to increased vulnerability for peer rejection, low levels of social support, and social anxiety.
B. Estimating Prevalence of Psychopathology
Two primary factors have been associated with the discrepancy (less than 10% to more than 80%) in prevalence rates of psychiatric disorders that have been reported for people with mental retardation.
1. Assessment
An accurate count of individuals who have a dual diagnosis is dependent on valid and reliable assessments of both mental retardation and psychiatric disorder. Difficulties associated with obtaining valid estimates of adaptive behavior deficits have been noted since this criterion was first included in the definition of mental retardation. Prevalence studies have also been based on definitions of mental retardation that vary from the AAMR definition. Some widely cited studies (e.g., Isle of Wight) have even used definitions that considered low IQ, but not adaptive behavior deficits, as the criterion for mental retardation.
Reliable diagnosis of mental health problems in persons with mental retardation also presents a major challenge to clinicians. Identification of psychiatric disorders depends on the clinical method, the source of information, and the taxonomy of disorders used to assign diagnoses. For example, one multimethod study of people with mental retardation found that the prevalence rates of mental disorders ranged from about 12 to 59%, depending on the method of assessment that was used.
2. Sampling Bias
Prevalence estimates are also affected by sampling bias. A large number of studies have been based on samples of individuals who have either been referred to clinics for psychiatric assessment or have resided in institutions where behavior problems led to their placement. Not surprisingly, these studies overestimate the presence of mental health problems among the population of persons with mental retardation. Service system registries comprise another major sampling source, wherein individuals receiving state-funded services are included in databases containing records of client characteristics and services provided. Because people with mild mental retardation are less likely to require state services if they do not have serious health or behavior-related problems, these databases probably overestimate the prevalence of dual diagnoses among people with mild mental retardation in the population. Finally, because many states have separate agencies providing services for persons with mental retardation and mental health problems, prevalence estimates may be affected by the determination of which agency tends to serve persons with both conditions.
C. Relationships with Age
Although age has not been found to be related to the overall distribution of psychiatric impairment, studies of specific disorders suggest that some conditions may be age-related. Moreover, in studies of behavior problems that have not been restricted to those with formal psychiatric diagnoses, age differences have been identified in rates of observed problem behavior in people with mental retardation, with lower rates found for children than for adolescents and adults.
D. Relationships with Intellectual Level
The relationship between the overall frequency of psychiatric disorder and severity of retardation has not been established; however, the available evidence suggests that specific types of psychiatric disorder appear to be more commonly found among certain levels of mental retardation. Most studies show that the types of psychiatric syndromes observed among children and adults with mild or moderate levels of mental retardation are similar to those found in the general population, for example, major affective disorders; schizophrenia; obsessive-compulsive disorder; disorders of conduct; anxiety, activity levels, and attention; and mood and affect disorders. In contrast, some disorders are more commonly manifested by persons with severe levels of mental retardation, such as autism and other pervasive developmental disorders, aggression, stereotypic behaviors, and self-injurious behavior. Stereotypy (repetitive motor behaviors) and self-injury may occur in isolation or in conjunction with major neuropsychiatric disorders among persons with severe or profound mental retardation.
E. Relationships with Gender
Most studies have found no significant relationships between overall behavior disturbance and gender. However, gender differences have been observed within certain types of disturbance. For example, consistent with findings in the nonretarded population, antisocial behavior has been found to be more prevalent among males, while emotional disturbance has been observed more frequently among females.
F. Relationships with Etiology of Mental Retardation
The evidence suggests that certain genetically related causes of mental retardation, such as Prader Willi syndrome, Cornelia de Lange syndrome, Lesch-Nyhan disease, fragile X syndrome, and Williams syndrome are associated with the presence of specific behavior problems and psychological disorders in persons with mental retardation. Lesch-Nyhan disease is best known for the manifestation of self-injurious biting. The minority of individuals with Lesch-Nyhan who do not bite indulge in some other form of selfinjurious behavior, such as head banging. Aggressive behavior is also directed against others, and most of these individuals vomit, which interferes with nutrition. Lower incidences of self-injurious behavior than those in Lesch-Nyhan have been observed among persons with Cornelia de Lange syndrome, Tourette’s syndrome, and fragile X syndrome. The majority of self-injuring individuals, however, have nonspecific diagnoses of mental retardation and display this behavior in self-stimulating or stereotypic patterns.
Fragile X syndrome is the most common known inherited cause of mental retardation and developmental disabilities. Attention deficit disorders, autistic disorders, and socially related and anxiety-based disorders appear to be associated with fragile X syndrome, although these disorders are not present in all persons who have fragile X. Food preoccupation, hyperphagia, and obesity are most often associated with Prader Willi syndrome. Recent studies have also linked maladaptive symptoms that are not related to food, such as obsessive-compulsive disorder, temper tantrums, internalizing problems, and oppositional-defiant disorders to individuals with Prader Willi syndrome. Recent data suggest increased risks of anxiety disorders and attention deficit hyperactivity disorder among people with Williams syndrome. Adults with Down syndrome appear to be at a higher risk of depression relative to other adults with mental retardation. Researchers have also discovered links between Down syndrome and Alzheimer’s disease, with people with Down syndrome having a greater than average risk of developing this disease after the age of 45.
G. Behavior Problems Distinguished from Psychiatric Disorders
Observed behavior problems do not by themselves indicate psychopathology. Interrelationships between deficits in adaptive behavior, maladaptive or problem behavior, and psychiatric disorders among persons with mental retardation are complex. Maladaptive behavior is a term that has been used in the field of mental retardation to refer to problem behaviors that are sometimes categorized as personal (e.g., self-injury, depression) or social (e.g., aggression, property destruction). In general, the terms maladaptive behavior and behavior problems are used interchangeably. Despite the definitional criteria that require deficits in adaptive skills to be present in persons with mental retardation, these deficits are not always associated with maladaptive behavior. Adaptive and maladaptive behavior represent two distinct, independent constructs and deficient interpersonal skill development (i.e., lack of adaptive skills) is not always associated with undesirable or pathological behavior.
Psychopathology is only indicated when behavior problems are part of an overall pattern of behavior. Although persons with a dual diagnosis are at a higher risk of evincing destructive behavior patterns (e.g., self-injury, aggressive behavior, and property destruction), it is clear that these destructive behaviors are also present among a significant proportion of people whose only diagnosis is mental retardation.
III. ASSESSMENT OF MENTAL HEALTH
Although the diagnosis of mental retardation is determined in part by deficits in adaptive functioning, the behaviors that one must display in order to be considered competent cannot be clearly delineated for every situation and age group. Measures of social competence must, for practical reasons, sample only selected behaviors that are used to represent typical functioning. Decisions that rely on measurement of adaptive and maladaptive behavior are highly dependent on the method of assessment used. Moreover, behavior is not expected to be “normal” for persons with mental retardation. Because base rates of behavior may be compared either to the general population or to the subset of people with mental retardation, the selection of a comparison group can also influence the identification of pathology.
A. Applicability of Taxonomies Used for the General Population
There is a general consensus that the full range of mental disorders observed in the general population is found among persons with mental retardation. Psychopathology is typically reported according to established diagnostic systems, such as the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM-IV), that are also used to classify disorders in persons with normal intellectual ability. Early versions of the DSM classification system were thought to lack reliability and validity for persons with mental retardation, but the heightened awareness of dual diagnosis in the 1980s led to vast improvements in defining DSM categories that were appropriate for persons with mental retardation. Some clinicians still contend, however, that the expression of psychopathology among persons with severe and profound mental retardation may take on different forms and require separate classifications.
B. Consideration of Quality and Reliability of Mental Health Information
1. Multimethod Approach to Assessment
Multiple informants and multiple methods of data collection are typically used to provide a clinical picture of abnormal behavior among persons with mental retardation. These methods, which may include abstracting information from case records, systematic observations, interviews, formal instruments, and medical examinations, provide ratings that may differ according to the rater’s familiarity with the individual, contexts in which behaviors are observed, rater or situational tolerance of the behavior, behavioral expectations, and response styles on rating scales.
2. Complications Caused by Communication Deficits
Communication deficits that are associated with low intelligence complicate the evaluation process in several important ways. The simplistic emotional expressions and concrete thought patterns that are characteristic of these individuals can lead to clinical misinterpretations of their behavior or mental health conditions. The identification of some syndromes also depends on information obtained by interview with the individual or observation of his or her speech (e.g., hallucinations, complaints of pain, or fears). With individuals who are nonverbal or who lack expressive language, it may be impossible to diagnose reliably certain conditions. Finally, individuals who lack the communication skills necessary to make their needs known or to interact socially with others may develop problem behaviors that represent attempts to communicate and do not stem from emotional disturbance.
3. Effect of Behavior on IQ Test Performance
Although the extent of its impact is difficult to determine, it is possible that severe behavior disorders, especially those present from early childhood, lead to poor performance on intelligence tests, which can result in a false diagnosis of mental retardation. The importance of knowing whether behavior disturbance has depressed a person’s behavioral functioning to such a degree that his or her IQ falls within the retarded range, or whether in fact the person has both mental retardation and a severe emotional disorder, has been questioned in terms of its relevance to treatment. Nevertheless, this distinction affects prevalence rates of dual diagnosis and may also determine which bureaucratic system (mental retardation or mental health agency) will assume responsibility for the provision of services to that individual.
C. Diagnostic Overshadowing
Diagnosticians are less likely to identify psychiatric illness in individuals with mental retardation, even when their observed behaviors are identical to those displayed by persons of average intelligence. This phenomenon, which has been referred to as diagnostic overshadowing, suggests that behavioral problems evinced by persons with mental retardation tend to be attributed to the retardation rather than to a concomitant behavior disorder. Because adaptive skill deficits partly define mental retardation, this attribution is understandable; however, it is likely to affect prevalence rates and may also lead to different profiles of persons with and without mental retardation who are given the same psychiatric diagnosis.
D. Measures Developed for Individuals with Mental Retardation
Historically, attempts were made with limited success to adapt instruments developed for the general population for use with people with mental retardation. The 1980s was a period in which the lack of adequate assessment instruments for identifying and classifying psychopathology among persons with mental retardation emerged as an important clinical and research priority. In 1991, Aman published a comprehensive review for the National Institute of Mental Health of instruments that had been specifically developed for or tested with samples of people with mental retardation. He identified 23 instruments that were appropriate as general purpose diagnostic tools. Of these, most were developed after 1984, indicating a flurry of activity in the past decade. Despite what appears to be a wide selection of available measures, however, the numbers are greatly reduced when they are broken down by relevant age groups, levels of mental retardation, specific conditions covered, type of rater used (self-ratings, other informant, or clinician), and whether adequate psychometric testing (e.g., reliability and validity) has been reported.
1. Clinical Dimensions across Instruments
A moderate degree of consistency has been found across factor analytic studies of the clinical dimensions of psychopathology, suggesting that similar dimensions are being tapped by different instruments. Aman noted, however, that the dimensions that emerge from factor analysis of items on an instrument are highly dependent on the collection of items or questions that it contains. For example, if an instrument contains few or no questions about self-injury, factor analyses cannot produce a separate dimension related to this problem. This point is particularly relevant if some behaviors that are unique to persons with severe and profound retardation are not included on measures that were originally developed for people with normal intelligence.
2. Validity of Instruments
Many instruments have not been evaluated for their validity, that is, their ability to identify accurately the psychopathology, and especially specific diagnostic categories. When the correctness of classifications has been examined, the current version of the DSM has typically been used as the criterion or standard (i.e., representing the true diagnosis). If the concerns that have been noted with regard to the appropriateness of using DSM systems to identify all disorders found among persons with severe and profound mental retardation are valid, then using the current version of the DSM as the criteria to establish the validity of new instruments may be problematic. It is also possible that certain disorders might exist in such persons but may be presented quite differently than presented in the general population, which would further compromise use of the DSM. Future work in this area of assessment should focus on the need for adequate standardization samples, carefully designed studies of classification accuracy and reliability, developmentally appropriate measures for persons of all ages and levels of mental retardation, and establishment of validity with respect to external criteria (differential response to treatment, long-term outcome, etc.).
E. New Evaluation Techniques
The development of neuroimaging technology in recent years presents new opportunities to understand certain psychiatric disorders and to provide rationales for treatment methods. Brain imaging techniques, for example, examine brain structure and anatomy, and include the use of computerized tomography (CT) and magnetic resonance imaging (MRI). Positron-emission tomography (PET) technology emphasizes brain function and provides sophisticated computer images of brain activity that can help to explain causes of emotional states in individuals with and without mental retardation.
IV. TREATMENT AND INTERVENTION
A. Historical Perspective on the Treatment of Behavior Disorders
With the recognition in recent years that a significant number of people with mental retardation have dual diagnoses, there has come a shift in approaches to treatment. Historically, maladaptive behavior was thought to be primarily a management of care issue and was treated by mental retardation professionals who used behavioral methods. Reduction of behavior problems meant more opportunities for educational, vocational, and residential placements in less restrictive settings, as well as increased involvement in community activities. Recent attention to dual diagnosis, combined with a broadened interest in affective and other internalizing behavior disturbances, has led to a greater involvement of mental health professionals in treatment efforts. Unlike behaviorally oriented therapists who view the specific diagnostic category as less important than observable behaviors, mental health professionals are more likely to believe that the best possible treatment requires the identification of a specific disorder and an accurate psychiatric diagnosis.
B. Relationship of Causal Factors to Treatment Methods
1. Causal Factors
Selected treatments of problem behaviors and psychiatric disorders were historically determined in conjunction with specific causal theories (e.g., organic, behavioral, developmental, and sociocultural) that were assumed to explain the behavior. In contrast to this single-factor approach, more recent efforts have focused on the complex interactions of multiple causes (e.g., biological and psychosocial) and on interdisciplinary approaches to treatment.
a. Low Intelligence and Environmental Factors
Reduced intellectual capacity, along with a limited repertoire of skills for coping with environmental demands, expose children with mental retardation to a wide range of stressful experiences. Some situations, although not unique to persons with mental retardation, are exacerbated by intellectual disability. For example, individuals with mental retardation are more likely to encounter teasing, social rejection, communication handicaps, academic failure, parental guilt and overprotectiveness, and overall rejection than their nonhandicapped peers. Lower intelligence, combined with environmental demands to adapt to novel situations or to modify established patterns of behavior, may also result in higher levels of anxiety. It is not surprising that difficult social situations, combined with limited abilities to handle them, result in an increased vulnerability to develop emotional problems.
b. Developmental Explanations
Based on the premise that persons with mental retardation develop along the same general patterns but at slower rates than their nonhandicapped peers, behaviors of individuals who are at similar levels of cognitive development are expected to respond in similar ways to environmental events and demands. Moreover, some behaviors that are considered appropriate when displayed by young children could also be considered “appropriate” (not pathological) among older persons with mental retardation who function at lower cognitive levels. In general, current developmental theories of disordered behavior consider genetic background, family history, neurological conditions, and life experiences along with cognitive levels of development.
c. Behavioral Theory
As noted earlier, behavioral theory has tended to dominate the treatment of maladaptive behaviors that are disruptive or harmful. Behavioral models focus on observed behaviors and on the interactions between people and their environments. Operant conditioning models concentrate on the effects of various types of reinforcement on both prosocial and problem behaviors. The importance of reinforcing appropriate behavior and of discovering and removing unintentional reinforcement of problem behaviors is emphasized. Classical conditioning and social learning theories have been used to explain connections between fears, phobias, and past experiences among persons with and without mental retardation. Although behavioral methods used in isolation have been successful in the reduction of problem behaviors among many persons with mental retardation, the importance of considering possible interactions between specific organic problems and behavioral contingencies has been noted.
d. Genetic Links to Behavior
Current research efforts have focused on the relationship of psychopathology to psychosocial and genetic factors, suggesting that knowledge of behavioral phenotypes (behaviors associated with specific genetic mental retardation syndromes) may help the development of optimal therapy and intervention for people with different disorders. For example, studies linking molecular genetics to behavioral variables are finding associations between psychopathology, cognition, and specific aspects of the fragile X gene. Other work has shown promising resuits that relate skin-picking and other compulsions to features of chromosome 15. Although there appears to be a link between affective disorders and Down syndrome, researchers have not yet determined that it is the genetic disorder that leads to depression. Current findings in genetic research suggest that the identification of causal relations between specific genetic syndromes and problem behaviors will make rapid progress during the next decade.
e. Family Influences
The evidence suggests that family processes are contributory factors in some cases of behavioral disturbance in children with mental retardation. Notwithstanding the fact that many families with children with retardation function quite well and provide emotional support to their children, the additional stresses associated with the child’s disability may lead to home environments and parent-child interactions that contribute to the development of behavior problems or more serious psychopathology.
f. The “New Morbidity”
Advances in medical care over the last several decades have greatly reduced the incidence of children’s mortality and morbidity (illness) from serious infectious disease. At the same time, however, a “new morbidity” has been described that affects a significant number of children in the United States and it appears to be strongly related to socioeconomic status, family constellation, and other social characteristics. These behavioral, social, and school-related problems in American society are thought to be health risks, because they are known to contribute to poor adjustment, handicaps, physical illness, mental retardation, and mental health problems in children. The risk factors associated with the new morbidity tend to operate interactively, causing children to become psychologically and biologically vulnerable to failure in environments that lack the supports necessary to promote their successful adaptation. The concept of a new morbidity has immediate implications for the prevention of dual diagnoses. For example, Fetal Alcohol Syndrome is a preventable condition that is known to be related to emotional disability. It is also one of the most commonly identified causes of mental retardation. Low birth weight babies, more common in poor economic and social environments, are also at high risk of mental retardation and emotional disorders. The concept of a new morbidity suggests that medical advances will not be sufficient to reduce the risk of dual diagnosis. A significant investment is also necessary in research and prevention efforts directed toward the social and behavioral aspects of the new morbidity.
g. Consideration of Multiple Causes: Self-Injury As an Example
Causal theories of self-injurious behavior have been studied extensively and can illustrate the ways in which multiple pathways can result in the same observed behavior. Self-injury, which is associated with several types of psychiatric disorder but is also observed independent of mental illness, appears to result from a variety of mechanisms. Among the noted origins are direct biochemical causes such as metabolic error (e.g., in persons with Lesch-Nyhan disease), increased levels of B-endorphin that increase tolerance for self-injury, and environmental factors (e.g., inadvertent reinforcement from attention received during behavior-stopping efforts, attempts to communicate needs or feelings). Research studies have also noted that even though one mechanism may serve as the initial cause of self-injury, a shift may occur later to a different mechanism that maintains more serious forms of the behavior. These different origins of self-injurious behavior suggest different approaches to treatment. Therefore, researchers have suggested that the most effective prevention and treatment approaches for behavior problems are determined by an understanding of the history and sequence of causal factors in each individual.
2. Treatment
Whereas clinical researchers studying treatment issues traditionally concentrated on problems affecting behavior management and treatment of severe behavior disorders (e.g., self-injurious behavior) in institutional settings, increased attention in recent years to such conditions as depression, schizophrenia, and anxiety disorders reflects a mental health movement that also considers the emotional well-being of all individuals with mental retardation, regardless of their residential placements. Current practices also reflect an interdisciplinary strategy that integrates behavioral, psychopharmacological, developmental, and other approaches to intervention.
a. Matching Treatment to Genetic Causes of Mental Retardation
The recent literature on syndromerelated differences in psychopathology suggests that improved accuracy in the identification of genetically caused mental retardation syndromes may have important implications for treatment. It has been suggested, for example, that “etiology-specific early intervention” may optimize treatment outcomes for some disorders. This approach assumes that some aspects of treatment are useful for all individuals with a given behavior; whereas other aspects of treatment may be unique to particular etiologies. It should be noted, however, that although certain genetically caused forms of mental retardation show associations with certain behavioral patterns, the behaviors are usually not exhibited by every person with the syndrome. This area represents a relatively new area of study that is being conducted in connection with the identification of new genetic disorders.
b. Behavior Therapies
Behavioral procedures have been identified as one of the most effective techniques for eliminating problem behaviors and replacing them with alternative, acceptable, and functional behaviors. Behavioral interventions focus on specific observable behaviors, rather than on syndromes. In a functional analysis of a target problem behavior, the environmental conditions that serve as antecedents or consequences of that behavior are identified. For example, functional analysis might reveal that inappropriate behaviors serve a communication or social function, a self-regulatory function, or a self-reinforcing play function. Similar behaviors can serve different functions across and even within children. Knowledge of this type informs therapists about the design of behavioral interventions. Intervention plans may involve teaching alternate, more appropriate responses to antecedent conditions, improving communication skills, rearranging the environment by removing or reducing stimuli related to problem behavior, or rearranging contingencies associated with the behavior.
Functional analyses can be used to modify instructional and environmental variables that affect student behavior at school. Altering antecedent stimuli, such as student choice and variation of tasks, instructional pace, sequencing tasks and breaking them into component parts, and modifying task difficulty have all been shown to reduce the occurrence of problem behavior among students with mental retardation. Although these methods may be less effective for more severe forms of disordered behavior, they are likely to promote learning and improved interpersonal relationships among a large percentage of students who exhibit behavior that is incompatible with effective instruction.
Similar behaviors that have different causal factors have been found to be differentially responsive to behavioral treatments. In general, behavioral interventions will be appropriate for learned behaviors, but may not be effective with behaviors that are organically or biologically caused. For example, whereas self-injurious biting among persons with Cornelia de Lange syndrome has been successfully treated by operant conditioning, this same behavior in Lesch-Nyhan patients tends to be resistant to behavioral approaches. Because Lesch-Nyhan disease is characterized by a defective enzyme that appears to influence the balance of neurotransmitters in the central nervous system, it is not surprising that behavioral methods are less effective in treating self-injury in these individuals.
c. Ethics of Aversive Interventions
Behavior reduction programs may use a combination of positive reinforcement and aversive procedures. Aversive interventions have been defined narrowly (e.g., interventions that cause physical or emotional pain or discomfort) and broadly (e.g., interventions that are not “positive,” including timeout, physical, or chemical restraints). Although pain or discomfort is commonly associated with aversive interventions, an aversive stimulus is simply a stimulus that a person seeks to avoid, defined by its consequences on the targeted behavior. Questions about the moral justification for the use of these procedures has caused considerable controversy among direct-care workers, clinicians, and professional organizations. Whereas a “freedom from harm” position holds that aversive intervention is morally wrong in all instances, the “right to effective treatment” position contends that unpleasant or painful treatments are ethical if they lead to outcomes that involve less overall physical damage than would be the case without the intervention. The latter position suggests that aversiveness must be judged in the context of long-term suffering experienced by the individual, not just in relation to the immediate effects of the aversive program. In other words, nonaversive interventions that are ineffective or only effective for the short-term, may, in fact, result in more prolonged suffering. Those who support the right to effective treatment base their arguments on an assumption of the effectiveness of aversive interventions; if these procedures are more immediately effective, then their use is justified from the beginning. The argument becomes more complicated in the absence of compelling evidence on the expected efficacy of treatment or degree of harm for specific individuals. Yet, individual circumstances and ethical considerations in studies designed to gather this information make it extremely difficult to gather the information. Other concerns about aversive treatments have been noted regarding the powerful role of the therapist, maintenance and generalization issues, lack of social acceptability, and emotional side effects.
d. Psychopharmacological Interventions
Clinical experience and experimental studies have provided promising evidence that psychopharmacological interventions can effectively treat psychiatric disorders among persons with mental retardation. Moreover, researchers are now finding that many behavior problems that have been resistant to behavioral or other treatment efforts have biological etiologies. There is some optimism that this knowledge will lead to successful prevention and effective neurochemical treatments for at least some of these conditions. For example, self-injurious behavior has been reduced in some individuals by as much as 50% through treatment by drugs that inhibit endorphin release and that appear to lower pain thresholds. Research findings on vulnerable neurotransmitter systems in nonhandicapped adults with Alzheimer’s disease have also led to pharmacological strategies that could alleviate cognitive impairments. Several studies have shown that behavioral symptoms associated with autistic disorders, including self-injury and stereotyped behavior, aggression, hyperactive behavior, and affective disorders, can be successfully treated with psychotropic medication. For some conditions, such as schizophrenia, responsiveness to pharmacological treatment has been found to be generally similar to that found among persons with mental retardation.
Claims of overuse and misuse of psychotropic drugs in institutional settings (often prescribed without regard to diagnosis and without close monitoring), along with evidence of high rates of the tardive dyskinesia (involuntary movement) side effect during the 1960s and 1970s, created a heightened awareness and even fear of psychopharmacological treatment. Psychopharmacology tended to be directed at the suppression of behavioral symptoms, rather than at matching drug therapies to well-defined syndromes. The antidrug sentiment was probably exacerbated by the exposure of a prominent researcher who was found to have falsified his research on drug therapies. This period was followed by dramatic decreases in psychotropic drug treatment. Although still the subject of controversy, current attitudes are generally more favorable toward drug therapy. Many clinicians are now trained to (a) differentiate psychiatric symptoms from maladaptive behavior, (b) consider the implications of behavioral syndromes, (c) pay attention to the psychological and physical costs of drug therapy, and (d) plan drug withdrawal programs that monitor the effects of withdrawal. The importance of close monitoring of pharmacological treatments, especially for persons residing in community-based settings, is emphasized.
Continued scientific study with controlled procedures and standardized assessments is also needed to answer questions about disorders and medications that have received less attention in previous research, potential side effects, identification of clinical factors that predict who will respond favorably to medical interventions, and the relative importance of linking pharmacological treatment to identified psychiatric disorders (rather than to isolated behavioral symptoms).
e. Skill Development
Functional skill development, initiated at early ages, has been hypothesized to play an important role in the prevention of serious behavior problems among persons with mental retardation. State-of-the-art services providing infant and preschool training in communication and social skills represent a comprehensive approach to teaching functional responses that might otherwise be replaced by problem behaviors. This approach to understanding behavior problems focuses on the lack of functional skills, rather than on the presence of behavioral excesses. Researchers and clinicians advocating this approach acknowledge that it may not be applicable to some severe problem behaviors that have physiological origins.
The communication function served by problem behaviors among many persons with mental retardation is well established. Communication training provides a mechanism for replacing inappropriate behavior with alternate means of expressing intentions and ideas. Research has demonstrated that even persons with severe degrees of mental retardation can be taught communication skills. Pragmatic theory, which focuses on the social function of language, has been emphasized to teach people with mental retardation to communicate.
Social skills training, which is based on the theory that social competence relies on specific skills necessary for social interactions, has been used successfully with many individuals with mental retardation. The need for training in social skills has been emphasized in numerous studies that have found people with mental retardation to lack the skills required to promote social acceptance and friendships in integrated settings. These studies have concluded that social skills training may be the key to the successful integration of people with mental retardation with their nonhandicapped peers. This training typically focuses on either context-specific skills (e.g., school, workplace, or residential setting) or on reducing social fears among persons with diagnosed social phobias.
V. PROMOTION OF MENTAL HEALTH
The President’s Committee on Mental Retardation has emphasized the need for national prevention programs in relation to mental health issues of people with mental retardation. Although national prevention programs have received less attention than other mental health issues in terms of federal support, research not specifically aimed at prevention has led to a sense of optimism about preventing or reducing the impact of mental health problems.
A. Prevention and the New Morbidity
Recognition of social and economic factors that cause or influence degrees of mental retardation and psychiatric disorders, that is, the new morbidity, has important implications for prevention. Prevention efforts that focus on subgroups with characteristics (e.g., low socioeconomic status, high prevalence of drug and alcohol use) that place them at a high risk for mental retardation and mental health problems will have the greatest impact. For example, improved prenatal care and health-oriented treatment of drug and alcohol abuse during pregnancy are obvious targets of prevention efforts.
B. Genetic Mapping
Recent scientific advances in the identification of causal factors related to mental health problems among persons with mental retardation have provided a sense of optimism about the eventual prevention of these conditions. More than 50% of severe and profound mental retardation is caused by genetically determined disorders. The application of DNA technology to studies of mental retardation has made it possible to map abnormal genes to specific chromosome regions. Within the next decade or so, researchers expect to define all of the disorders that are associated with severe mental retardation. Ultimately, researchers hope to identify DNA alterations that cause abnormal genes to malfunction. This research is progressing quickly and there is a sense of great optimism, because the capacity to develop DNA markers for genetic causes of mental retardation has important implications for prevention. It will soon be possible to identify persons who are at risk of having children that will be affected with genetic conditions that can result in mental retardation. Moreover, it is possible that in the long range it will be possible to develop complex gene therapies to treat genetic disorders. These developments in genetic mapping have provided new hope with regard to future cures or reversals of effects of inherited diseases that cause both mental retardation and mental illness.
C. Early Intervention Programs
Part H of the federal special education law, the Individuals with Disabilities Education Act, mandates that states provide coordinated early intervention services to children with disabilities from birth through 36 months. One component of Part H is the Individualized Family Service Plan, which identifies specific needs of the child and family and designates the services to be provided to meet those needs. Services can include psychological services, family training, counseling, and home training if their purpose is to prevent or reduce the impact of disabilities on the child and family. This recently mandated program, along with other federal and state-sponsored programs that target low income and disadvantaged children, should lead to reductions in the incidence of mental health problems among children with mental retardation.
VI. IMPLICATIONS OF MENTAL HEALTH CONSIDERATIONS
A. Cost of Mental Health Care
The cost of providing services to individuals in the United States with mental retardation who also display destructive behavior (e.g., aggression, self-injury, property destruction) was estimated in a 1991 study by the National Institute of Child Health and Human Development to exceed $3.5 billion per year.
B. Residential Placement
The presence of behavior problems among people with mental retardation has a direct influence on how and where they will live. In the wake of the deinstitutionalization movement, the majority of people who still reside in large, segregated, residential facilities are either those who are medically fragile or whose behaviors are not tolerated in less restrictive settings. Thus, the presence of challenging behaviors, especially those that are harmful to self, others, or property, limits opportunities for individuals with mental retardation to live with their families or in smaller community placements that provide for increased levels of independence. Studies of individuals living in community-based residences who are in jeopardy of being moved to more restrictive settings have noted that unmet needs for support, such as mental health services, professional counseling, and behavioral intervention services, contribute to the vulnerability of their residential status. Despite these systematic trends in placement selections, challenging behaviors are present among people in all types of living arrangements. The availability of resources, including well-trained and adequately paid staff, to serve the mental health needs of these individuals, will be a key to their living as independently as possible.
C. Family Issues
Research on families of children with mental retardation has established the important role that families play in the development and adjustment of their children. Contrary to earlier stereotypes of these families as typically having serious marital problems, parental psychopathology, and psychosocial adjustment problems, more recent research indicates that families with children with mental retardation are equally likely to function well. Trends toward a more positive perception of these families have not ignored the fact, however, that the presence of children with mental retardation adds additional parenting responsibilities and may contribute to higher levels of emotional and physical stress than is found in other families. Caregiving of children with mental retardation, who also have severe behavior problems or psychological disorders, presents additional responsibilities as families encounter more difficulties obtaining needed educational, medical, psychological, or other services. Depending on the condition that is identified as the primary diagnosis, the family may end up working with either or both mental health and mental retardation service systems, where professional attitudes toward parental involvement may differ and conceptual approaches toward treatment are also likely to differ. Although families are no longer implicated as the primary cause of psychological disturbance in their children, various factors related to the home and family context (e.g., marital relationships, parental depression, parent-child interactions, sibling relationships) have been identified as contributory factors for some children. Further research on these relationships is needed.
D. Educational Implications
1. Guarantee of Public Education
The Individuals with Disabilities Education Act (PL 94-142) requires public education systems to serve all children with mental retardation and severe behavior disorders. To the greatest extent possible, these students must be educated in what is believed to be the least restrictive environment, that is, by spending as much time as possible with their nonhandicapped peers. The law has also been interpreted in such a way as to limit the school system’s power to expel a student whose behavior is thought to be part of his or her disability. Each student must have a written Individualized Education Plan (IEP) that describes the major goals of his or her educational program. For children with mental retardation and severe behavior problems, the IEP should address remediation of behavioral excesses and deficits. It should designate opportunities to learn appropriate behaviors and document methods of discipline to be used. The use of intrusive or restrictive disciplinary procedures is prohibited unless there is compelling evidence that they represent least restrictive alternatives.
2. Written Safeguards in Schools
The legal guarantees for special education students have also led to the need for administrative procedures that safeguard both teachers and students in relation to responses to unacceptable behaviors exhibited in school. Constitutional rights and full informed parent/guardian consent required by PL 94-142 provide the basic protections to treatment of students. In addition, many schools have established behavioral specialist teams and human rights review committees, along with specific written safeguards that protect the rights of students, teachers, and educational administrators.
E. Service Delivery Systems: Two Handicaps–Two Service Delivery Systems
In the 1970s, most states recognized that the service-related needs of individuals with mental retardation and mental illness are different and they created two separated bureaucracies to serve them, that is, a department of mental retardation and a department of mental health. Concerns were expressed at the time that the needs of individuals who had both mental retardation and mental health problems might be left unserved, as they fell through the cracks between service delivery systems. Concerns were also voiced about the importance of cross-training competent professionals who would understand the complex mental health issues of people with a dual diagnosis. These concerns remain a high priority today.
Historically, efforts were made to distinguish between primary and secondary handicaps, thus determining the agency that would assume primary responsibility for provision of care. Services provided focused on the primary handicap, with little or no attention given to the secondary handicap. The concept of a dual diagnosis represents an alternative to the primary versus secondary handicap distinction, in which presumably all service needs can be addressed. This group of people requires specialized services that involve high levels of agency intercollaboration and interdisciplinary treatment programs; this is clearly an instance where the whole (dual diagnosis) is greater than the sum of its separate parts (mental retardation and mental health needs). Because doctors tend to be trained in either mental retardation o r mental illness, but not both, our service systems currently lack professionals specifically trained to treat individuals with dual diagnoses. The federal Department of Health and Human Services has recently recognized this, citing the mental health needs of individuals with developmental disabilities (including mental retardation) as one of its top funding priority areas.
F. Legal Issues
The presence of both mental retardation and mental illness poses difficult legal and ethical issues. For example, individuals with mental retardation and serious mental illness may find it difficult, or even impossible, to make informed, legally appropriate decisions. In this case, a third-party decision maker may assume this responsibility. Although this is legally defensible and is intended to benefit the individual, ethical issues remain when personal autonomy is substituted for proxy consent. Thus, according to a “substitute judgment doctrine” invoked by the legal system, the task of the decision maker is to attempt to determine how the individual would have decided if he or she were competent in this role, rather than to judge what is best for him or her. Analysts of this doctrine explain that this rule treats people with dual diagnoses (who are determined incompetent in the legal sense) the same as it treats individuals who can decide for themselves, that is, with respect, autonomy, and dignity of choice.
Individuals with dual diagnoses are protected by the due process clauses in the Fifth and Fourteenth Amendments. Therefore, they have the right to the same procedural safeguards as people without mental retardation. This right has particular relevance when individuals with dual diagnoses are accused of crimes, refuse medical treatment, or are placed in state residential facilities. Numerous court cases have confirmed the constitutional rights of this group; neither punishment, nor medication, nor residential confinement without safety and personal freedom can be denied on the basis of a person’s limited intellectual capacity.
BIBLIOGRAPHY:
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