Psychiatric Assessment of the Person
With Mental Retardation

As published in the Psychiatric Annals 27:3/March 1997

The psychiatrist who does not specialize in mental retardation and developmental disabilities typically has had little or no exposure in medical school or residency training to the special diagnostic and therapeutic issues posed by this population,¹ yet many psychiatrists will be called on, at some time, to evaluate and treat individuals with mental retardation, often in crisis situations requiring emergency admissions or in inpatient facilities. It is essential, therefore, that psychiatrists acquire the basic tools needed for assessment and treatment planning at the interface of mental retardation and psychiatric disorders.

WHAT IS MENTAL RETARDATION?
Definition
  The DSM-1V² defines mental retardation as follows:

1. Significantly subaverage intellectual functioning-ie, an IQ of approximately 70 or below.
   
2. Deficits or impairments in adaptive functioning.
   
3. Onset before age 18 years.
   

Levels of Severity
  Mental retardation is subdivided into levels of severity based on IQ and associated features (Table 1).

Incidence
  Individuals with mental retardation represent 1% to 3% of the general population. Mental retardation is approximately 1.5 times more common in boys than in girls.
  Until recently, a significant proportion of individuals with mental retardation were cared for in residential facilities such as state-run training schools. Currently, however, the vast majority of the developmentally disabled live in the community and use community resources for treatment.

Causes
  Mental retardation is highly heterogeneous as to cause. More than 250 biologic causes are known, most of which can be grouped under the general categories of chromosomal abnormalities, other genetic factors, prenatal and perinatal factors (eg, anoxia), acquired childhood disorders, environmental factors (eg, lead),³and sociocultural factors.
  Knowing the cause in a particular case can sometimes provide important clues for understanding an individual's presentation; however, only approximately 25% of cases of mental retardation have a known biologic cause; in the remaining 75% of cases, the cause is unknown or is traceable to nonbiologic (eg, psychosocial) factors.

MENTAL RETARDATION AND PSYCHIATRIC DISORDERS
  It has been estimated that 40% to 70% of individuals with mental retardation have diagnosable psychiatric disorders.⁴ This subgroup of individuals, however, are not the only ones who come in contact with psychiatrists. Like anyone else, a developmentally disabled person may present with emotional, behavioral, interpersonal, or adjustment problems that do not constitute major psychiatric disorders but that may benefit nonetheless from psychiatric input. Psychiatrists should remember that in clinical settings they do not have the opportunity to see people with mental retardation living and working in the community in a normal, non-problematic manner. As a result, they often do not have a baseline with which to compare current functioning.
  Psychiatrists called on to evaluate and treat developmentally disabled individuals in either an emergency or inpatient setting need to be aware of special considerations that set this population apart. These considerations occur mainly in two areas: (1) working as part of a team with the patient's regular caregivers; and (2) characteristics of mental retardation that may confound the usual procedures for psychiatric diagnostic assessment and treatment planning.

Relationships With Other Caregivers
  Psychiatric care of individuals with mental retardation is most effectively rendered when the psychiatrist uses an interdisciplinary team model.⁵ The psychiatrist must take into account not only the acute problem but also the patient's relationship to long-term caregivers. These professionals tend to be deeply involved in the life of the patient, who they care a great deal about and see as their "client." They will likely contribute critically important diagnostic information and play a crucial role in implementing the treatment plan.
  At the same time, referring caregivers sometimes distrust doctors and medications.^4'6 This aversion may lead them to delay getting a consultation until they are "at the end of their rope" and feel as if they can no longer cope with the patient, whose condition may have worsened in the interim. They may simultaneously harbor unrealistic expectations, such as that the psychiatrist will be a magical rescuer. This ambivalence can have disruptive consequences. A successful treatment outcome may depend in part on how well the psychiatrist can bridge the gap between different conceptual models (medical versus habilitative), clinical languages, and organizational styles.

Special Diagnostic Issues
  Mental retardation may obscure the standard diagnostic indicators of psychiatric disorders. For one thing, especially for the psychiatrist unaccustomed to the normal manifestations of mental retardation, those manifestations may overshadow symptoms attributable to psychiatric illness.⁷ Moreover, impairments in cognitive and verbal skills make it difficult for many developmentally disabled individuals to articulate abstract or global concepts such as a depressed mood. Most DSM-IV diagnoses require that the patient describe his or her internal state. Asking a person with an IQ below 40 about hallucinations, delusions, or guilt is seldom productive. On the other hand, the person's disorganized behavior may have diagnostic significance.⁸
  These are the challenges that people with mental retardation often pose for psychiatric diagnosis. Sovner ⁹ identified four aspects of mental retardation that may influence diagnosis:

1. Intellectual distortion - emotional symptoms are difficult to elicit because of deficits in abstract thinking and in receptive and expressive language skills.
2. Psychosocial masking - limited social experiences can influence the content of psychiatric symptoms (eg, mania presenting as a belief that one can drive a car).
3. Cognitive disintegration - decreased ability to tolerate stress, leading to anxiety-induced decompensation (sometimes misinterpreted as psychosis).
4. Baseline exaggeration - increase in severity or frequency of chronic maladaptive behavior after onset of psychiatric illness.

PRINCIPLES OF EMERGENCY EVALUATION
  In a crisis, the emergency room can serve as a safe holding environment, a place for acute stabilization, emergency sedation, medical and psychiatric evaluation, and disposition for further treatment. When approaching a developmentally disabled person and his or her regular caregivers in a crisis situation, following certain basic principles helps set the stage for a less stressful, more nurturant, and more accurate evaluation. Some of these guidelines are equally applicable to the assessment of the developmentally disabled person in a more stable inpatient or outpatient situation.

• Evaluate the patient in a safe, private, quiet place. Seeing, hearing, and being seen and heard by other patients and staff can be frightening, distracting, or over stimulating. Some individuals may deliberately attract attention by behaving disruptively when they have an audience.
• Conduct the evaluation promptly. Having to wait may cause additional behavioral deterioration.
• When possible, invite familiar staff, family, or both to keep the patient company and provide history. Individuals with mental retardation benefit from predictable, reassuring stimuli.
• Calm the patient and the caregivers. Attending to the needs and concerns of the caregivers and encouraging them to contribute to the solution can often help defuse the problem.
• Explain any procedures simply and clearly.
• Primum non nocere (first, do no harm). Unless absolutely necessary; try to avoid measures such as seclusion and restraint that may increase the individual's distress.
• Determine the reason for coming to the emergency room. This guideline may seem obvious, but a hidden agenda may exist.
• Beware of the "vanishing" problem. A previously agitated patient who calms down on arrival at the emergency room presents a diagnostic dilemma because it is difficult to evaluate a behavior that is not in evidence. Although the hospital staff may want to send the patient back, the regular caregivers may fear a recurrence. It is therefore necessary to evaluate the underlying problem, assess the likelihood of a recurrence, and intervene appropriately.
• Do not attempt a definitive diagnosis in the emergency room, which is especially problematic with the developmentally disabled population.
• Discourage use of the emergency room for behavioral control. The emergency room should not be perceived by the patient, nor used by the staff, as a form of punishment or threat. Nor should the psychiatrist be cast as a bogeyman who, as a last resort, is there just to tranquilize the patient.
• It is not necessary to resolve the problem completely in the emergency room. You may draw on the experience and resources of the caregivers or refer to an appropriate community or state agency.

MANAGEMENT OF AGGRESSION OR SELF-INJURIOUS BEHAVIOR
  The most common categories of acute presentations in individuals with mental retardation are:

1. New onset or escalation of aggression, self-injurious behavior, or both
2. Changes in mental status, such as:
   • Hyperactivity or irritability
   • Confusion or disorientation
   • Lethargy or withdrawal
   • Psychotic symptoms
   • Other changes in mood, energy, or sleep patterns
3. Medication side effects, especially extrapyramidal symptoms
4. Physical complaints or behavioral manifestations that might signify physical illness

Adaptive Functions
  Lowry and Sovner¹⁰ describe four functions of problem behavior that should be considered in any evaluation:

1. Socioenvironmental control. Aggression and self-injurious behavior can be reinforced (ie, removing a person from an unpleasant situation in response to such behavior will increase the probability that the person will react similarly in the future).
2. Communication. Problem behaviors can be a nonverbal means of communicating a variety of messages (attention, discomfort, needs).¹¹
3. Modulation of physical discomfort. Medical conditions, including medication side effects, can cause physical discomfort leading to aggression or self-injurious behavior.
4. Modulation of emotional discomfort. Problem behaviors can occur as a state-dependent function of such disorders as major depression or bipolar disorder, manic phase.¹²

Evaluation and Treatment Strategies
  Lowry and Sovner¹⁰ have proposed a four-part strategy for evaluating and treating problem behaviors:

• Conduct a comprehensive functional assessment of the problem behavior.
• Develop one or more working hypotheses.
• Select treatments that address the hypothesized function of the behavior.
• When a behavior serves multiple functions, target those derived from biologic dysfunctions first.

Differential Diagnosis
  When possible, treatment should be directed at the medical illness, psychiatric disorder, or other underlying cause of the maladaptive behavior. Table 2 shows a differential diagnosis for aggression, with the appropriate treatment linked to the cause of the aggression.

Symptomatic Treatment
  Treatment of aggression and self-injurious behavior secondary to mood disorders or psychotic disorders has met with some success. Because it is not always possible to diagnose the underlying psychiatric disorder or other cause, a symptomatic approach is sometimes necessary. Symptomatic treatments for aggression and self-injurious behavior include beta blockers, particularly for individuals with rage attacks or chronic states of overarousal¹³; buspirone when significant anxiety is present¹⁴; mood stabilizers such as lithium and carbamazepine when irritability exists¹⁵; neuroleptics¹⁶; opiate antagonists, such as naltrexone, especially in autism¹⁷; and selective serotonin reuptake inhibitors, such as fluoxetine, especially when the aggression is impulsive.¹⁸

INDICATIONS FOR HOSPITALIZATION
  On the basis of the emergency evaluation, any of the following dispositions may be agreed on:

• Return to current living situation
• Respite care or increased monitoring at home
• Medical treatment
• Inpatient psychiatric hospitalization

COMPONENTS OF A PSYCHIATRIC ASSESSMENT
  The components of the assessment are described here for an inpatient evaluation, but most can also be performed in an outpatient setting.

History
  A thorough history, crucial for a psychiatric diagnosis, can be obtained from three sources: the patient, other informants, and medical records.
  The following guidelines are useful for interviewing the patient with mental retardation:

• Talk to the patient, even if it appears that the patient might not understand, because a person's receptive language skills are likely to exceed his or her expressive skills.
• Pay attention to the patient's developmental level, which may necessitate talking in a more concrete fashion, focusing on the here and now, and using words appropriate to the patient's level of understanding.
• Avoid leading questions, to which many developmentally disabled people are susceptible.²⁰
• Use physical expressions and gestures to communicate with the patient. Consider techniques such as metaphor and storytelling to facilitate communication. Observe the patient's nonverbal interactions, especially with familiar caregivers.

• Recent changes in the patient's physical or social environment, such as a move from school to day programming or a workshop, a change of residence, loss of a favorite staff member, or anniversary dates of losses.
• Circumstantial patterns such as symptoms associated with a particular setting or time of day. Maladaptive behavior that regularly occurs at the workshop but not in the group home, or vice versa, can help differentiate an underlying psychiatric disorder from a situational response.
• A longitudinal history to correlate with concurrent events such as stressors, medical problems, and medication changes.²¹

• Psychologic evaluation - baseline data on IQ, level of adaptive functioning, language and communication skills, and ability to interact with others. These data can be contrasted with current status to identify decompensation.
• Social and developmental history - pregnancy, birth process, and early environment, any of which may cast light on the cause of mental retardation.
• Family history - mental retardation, mental illness, and other medical disorders.
• Medical history - incidence of cerebral palsy, sensory deficits, epilepsy, and other neurologic disorders increases as IQ decreases.²² A dysmorphologic syndrome often is associated with medical problems.²³
• Physicians' and nurses' notes - sleep, weight, and activity levels; previous consultations; laboratory findings; medication history. Drug interactions can precipitate aggression or self-injurious behavior.

Behavioral Data
  Longitudinal behavioral data, when correlated with concurrent events such as environmental stresses, medical problems, and changes in medications, can contribute significantly to diagnosis and treatment. If possible, identify target behaviors that are symptoms of the (known or suspected) underlying psychiatric disorder and may be drug responsive, such as sleep disturbance in major depression. Establish baseline rates of the target behavior(s) to monitor response to treatment. A behavioral psychologist can help design, monitor, and educate the staff about data collection.

Mental Status Examination
  The mental status examination is an essential step in differentiating psychiatric from medical or situational problems. As modified for individuals at lower levels of functioning, it may include the person's general appearance; relationship to the examiner and others in the room; level and fluctuation of consciousness; psychomotor retardation or agitation; mood; range and appropriateness of affect; ability to communicate; ability to follow simple commands; visuospatial memory; orientation; and any observed abnormal involuntary movements, tremors, stereotypies, automatisms, or self-injurious behavior.
  When longer hospital stays were the rule, various rating scales and assessment tools were developed for persons with mental retardation.^24'25 Although their use has been greatly curtailed by limitations on inpatient stays, situations may still arise in which such instruments can be employed feasibly.

Physical Examination and Diagnostic Studies
  A thorough medical evaluation is needed to rule out an organic cause of a change in mental status or maladaptive behavior. This aspect of the assessment is especially important because people with mental retardation have an elevated rate of associated physical disabilities. The physical examination must be performed systematically and patiently. Occasionally, when the individual is uncooperative and organic pathology is strongly suspected, sedation may be necessary.
  The evaluation resembles that performed to identify the causes of delirium and dementia in a geriatric population. Routine laboratory work consists of an EKG, measurement of electrolyte levels, a complete blood count, screening blood chemistry, urinalysis, measurement of folate and B-12 levels, syphilis serology, and thyroid function tests. Depending on the differential diagnosis, other laboratory tests may include an EEG, a brain imaging scan such as CT or MRI, and blood level measurements, especially of anticonvulsants.
  Drug interactions and medication side effects must also be considered.

• Benzodiazepines with long half-lives may accumulate, leading to drowsiness and mental clouding. Short-acting benzodiazepines may cause interdose rebound symptoms, with marked worsening of anxiety just prior to scheduled doses. In autistic individuals, benzodiazepines may cause ataxia.
• Anticonvulsants may produce excessive sedation. Occasionally, phenobarbital may have paradoxic disinhibiting effects.
• Antipsychotic drugs can have serious side effects, such as Parkinsonism and akathisia, that may be confused with worsening agitation. Such misdiagnosis can lead to a counterproductive increase in the neuroleptic dose. Excessive doses of antipsychotic drugs can interfere with alertness and overall performance. On the other hand, a precipitous reduction in dosage can lead to problems such as agitation, behavioral deterioration, and worsening abnormal involuntary movements, which may represent transient withdrawal dyskinesias.
• Other medications whose effects should be monitored include antihypertensive drugs, eyedrops for glaucoma (often beta-adrenergic blockers), and allergy medications (almost all anticholinergic or antihistaminic).

Consultations
  As part of the interdisciplinary team approach, the scope of the evaluation may be broadened to include, as needed, consultations with the disciplines of internal medicine, gynecology, neurology and behavioral neurology, neuropsychology, pharmacology, hearing and speech therapy,¹⁹ physical therapy, occupational therapy, and leisure skills therapy.

TREATMENT PLANNING
  The treatment plan should:

• include community caregivers and hospital staff.
• formulate specific treatment goals, remembering what can reasonably be accomplished within a relatively short inpatient stay.
• avoid (as much as possible) treatments that cannot be continued in the community, such as medications taken as required or seclusion and restraint.
• take into account the crucial importance of variables such as consistency versus change in the patient's environment, greater or lesser supervision of the patient's activities, identification of possible stressors, and implementation of behavioral management strategies.
• use therapy, activity groups, or both to bring out the person's capacity for learning and participation (for more cognitively impaired or acutely psychotic individuals, focus groups may be used to improve orientation).

Psychopharmacologic Treatment
  The use of medications should be reserved for appropriate target disorders and syndromes. Medications should not be administered to the patient simply as a response to staff anxiety. To avoid this common pitfall, the psychiatrist may need to confront staff expectations skillfully, explaining that although "we all would want to have a medication that would treat the symptoms without side effects," such a medication does not exist. Emphasizing the possible environmental causes of problem behaviors can also help reduce the demand for indiscriminate prescription of medications.
  When antipsychotic drugs are used for non-specific sedation, the danger is that their use will be continued indefinitely, resulting in preventable side effects. Short-term administration of a benzodiazepine is a better choice for nonspecific sedation. Of course, medications may be needed for longer-term treatment of depression, bipolar disorder, psychotic disorders, obsessive-compulsive disorder, or attention deficit disorder. In addition, short-term pharmacologic treatment may be useful when certain symptoms have not responded to environmental interventions.²⁶ Among these symptoms are the following:

• sleep disturbances (eg, with a benzodiazepine or trazodone)
• agitation (eg, with a benzodiazepine)
• impulsivity, aggression, and self-injurious behavior (eg, with empiric trials of buspirone, beta-adrenergic blockers, selective serotonin reuptake inhibitors, or carbamazepine)

DISCHARGE PLANNING
  Appropriate acute or short-term inpatient treatment, coupled with long-term treatment recommendations, has the purpose of returning the individual to his or her prior environment or other suitable community setting. Effective discharge planning often strengthens the supports provided by an existing placement even as it facilitates continued psychiatric care. Most patients have an existing caretaking system to which they can return. To prevent the psychiatric unit from becoming a long-term residential facility for difficult clients, the referring agency should guarantee in writing a placement after discharge.¹⁹
 Ideally, discharge planning, including plans for outpatient follow up and the provision of any additional services, should begin at the initial treatment planning meeting or even before admission. Communication is the key to effective planning. Early and continual contact with all community supports, from family to outpatient therapists, is imperative. Questions to be addressed include the following:

• Who is responsible for which service (case manager, family, agency, client, and others)?
• What is expected from this hospitalization?
• What are the minimal discharge criteria?

• Review the course of hospitalization and discuss how a subsequent inpatient stay can be avoided or shortened.
• Create a data collection mechanism to assist the regular caregivers in observation, recording, and communication of pertinent information.
• Recommend any additional appropriate tests.
• Coordinate follow-up appointments and identify triggers for unscheduled telephone or in-person follow up.
  

LEGAL CONSIDERATIONS
  The psychiatrist should be aware of several important legal considerations.²⁸

Informed Consent
  The diagnosis of mental retardation does not by itself imply that the individual is incompetent to consent to treatment. Competence must be assessed on a case-by-case basis. An individual who appears to understand the benefits, risks, and alternatives to psychiatric hospitalization should be given the opportunity to sign in voluntarily, unless a guardian has been appointed by the court. In an emergency setting, life-threatening problems warrant emergency treatment, even in the absence of informed consent. If someone is clearly not competent, a long-term caregiver or family member should be asked to consent to the evaluation and treatment.

Guardianship
  In cases where competence is impaired, guardianship may already have been established or may need to be considered. When a legal guardian has been appointed, authorization for evaluation and treatment must be obtained from the guardian, except in life-threatening emergencies.

Mandated Reporting of Abuse of Disabled Persons
  Many states have statutes that require medical personnel to report any suspicion of abuse.

Consent Decrees
  Many states have entered into binding legal agreements as a result of lawsuits initiated by plaintiffs to improve the quality of care delivered to people with mental retardation. These consent decrees may mandate procedural safeguards and specific measures of quality of treatment.

Acknowledgement
  The authors are indebeted to Archie Brodsky for his help with the manuscript.

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