- Excerpt from Chapter 27, Adjustment Disorders, by Andrew
Levitas, M.D. and Anne D. Hurley, Ph.D.
Adjustment Disorders involve the development of clinically
significant emotional or behavioral symptoms in response to an
identifiable psychosocial stressor or stressors. This definition
incorporates an extremely valuable diagnostic concept, suggesting
that environmental stressors, so common in the lives of persons with
ID, might be a correctable source of psychopathology, which could
otherwise have been mistaken for more serious mental health disorders.
The clinician should modify existing diagnostic criteria for
application in the ID population, especially for application to
individuals with Severe or Profound ID. To use this diagnostic
category accurately and with benefit to the patient, the clinician
should be very familiar with the subculture of ID (Aman, 1991)
(Strength of Evidence: V).
Review of Diagnostic Criteria
There are five specified subtypes of Adjustment Disorder describing
symptoms of depressed or anxious mood, changes in behavior, and
combinations thereof; there is also a sixth, “Unspecified” subtype.
The core concept of Adjustment Disorders as a group is that they are
emotional or behavioral responses to identifiable environmental
stressors. These responses can mimic symptoms of, but are not
manifestations of, other Axis I disorders or normal bereavement.
Summary of DSM-IV-TR Criteria
Adjustment Disorders as a group are emotional or behavioral responses
to identifiable environmental stressors, developing within three
months of the onset of the stressor, consisting either of marked
distress in excess of what would be expected given the nature of the
stressor or of significant impairment of functioning, not meeting the
criteria for another specific Axis I disorder, and being not merely
an exacerbation of a preexisting Axis I or II disorder. Adjustment
Disorder can be diagnosed in the presence of another Axis I or Axis
II disorder if the latter does not account for the pattern of
symptoms occurring in response to the stressor. The diagnosis of an
Adjustment Disorder does not apply if the symptoms represent
bereavement. An Adjustment Disorder must resolve within six months of
the termination of the stressor (or its consequences), but symptoms
might persist for longer than six months if they occur in response to
a chronic stressor or to a stressor that has enduring consequences.
Subtypes are defined by the predominating symptoms. Thus there is:
· Adjustment Disorder with Depressed Mood,
characterized by depressed mood, tearfulness, or feelings of
hopelessness—that is, features of Major Depressive Disorder
· Adjustment Disorder with Anxiety,
characterized by anxiety, worry, or—in children—“fear
of separation from major attachment figures”—that is,
symptoms typical of Generalized Anxiety Disorder or of Separation
Anxiety Disorder
· Adjustment Disorder with Mixed Anxiety
and Depressed Mood, characterized by a combination of the foregoing
· Adjustment Disorder with Disturbances of Conduct,
characterized by “violation of the rights of others or of major
age-appropriate societal norms and rules (for example, truancy,
vandalism, reckless driving, fighting, defaulting on legal responsibilities)”
· Adjustment Disorder with Mixed
Disturbances of Emotions and Conduct, characterized by features
of all of the foregoing
· Adjustment Disorder, Unspecified,
characterized by “maladaptive reactions (for example, physical
complaints, social withdrawal, or work or academic inhibition)”
Adjustment Disorder might be Acute (the duration of symptoms is less
than six months) or Chronic (the duration is “longer than six
months in response to a chronic stressor, or to a stressor that has
enduring consequences”). The nature of the stressor can be noted
on Axis IV, but it should be noted that Axis IV is not normed for
people with ID.
Summary of DSM-IV-TR Field Trials and Other Related Research
The DSM-IV-TR category Adjustment Disorders, little changed
from the DSM-III and the DSM-III-R, descends directly
from the DSM-II diagnosis Transient Situational Disorders.
Both share the concept that psychosocial stressors can cause
behavioral and mental health symptoms that will be relieved by the
removal or the cessation of the stressors. Beyond that essential
similarity, the two definitions differ considerably. Andreassen and
Wasek (1980) (Strength of evidence: IV) note that, in the DSM-II,
“the disorder was defined as both transient and acute, the
precipitating stress was defined as overwhelming, and the diagnosis
could only be made in individuals without any apparent underlying
mental disorder.” The DSM-III Task Force incorporated
most of the changes recommended by Wynne (1975) (Strength of
evidence: IV) and operationalized them, efforts that resulted
substantially in the DSM-IV-TR definition we have today.
Controversial from the beginning (Fard, Hudgens, & Weiner, 1979
[Strength of evidence: IV]; Greenberg, Rosenfeld, & Ortega, 1995
[Strength of evidence: IV]), Adjustment Disorder nevertheless
demonstrates content validity, in that patients differ from those
with no diagnosis and those with Mood Disorder, Anxiety Disorder, or
Conduct Disorder in several ways, including differences in the nature
of the causal stressors (Casey, Dowrick, & Wilkinson, 2001
[Strength of evidence: IV]; Despland, Monod, & Ferrero, 1995
[Strength of evidence: IV]; Snyder, Strain, & Wolf, 1990
[Strength of evidence: IV]), in vulnerability related to social
isolation, and in the quality of life measures (Snyder et al., 1990)
(Strength of evidence: IV). Predictive validity is demonstrated by
outcome studies showing rapid resolution of symptoms (Snyder et al.,
1990) (Strength of evidence: IV), 79 percent remission after 5 years
in affected adults (Andreassen & Hoenk, 1982) (Strength of
evidence: IV), and development of a chronic course in less than 17
percent (Bronisch, 1991 [Strength of evidence: IV]; Greenberg et al.,
1995 [Strength of evidence: IV]).
Adjustment Disorders are thought to be common, but ascertainment is
extremely difficult. The DSM-IV-TR cites studies of outpatient
mental health populations with a “principal diagnosis of
Adjustment Disorder” showing prevalence rates of 5 to 20
percent, and between 2 and 8 percent in children and adolescents.
Adjustment Disorder has been diagnosed in 12 percent of general
hospital patients referred for mental health consultation, 10 to 30
percent of those in outpatient mental health settings, and up to 50
percent in populations that have experienced particular stressors
(for example, cardiac surgery). Obviously these are measures of
prevalence in persons who for diverse reasons sought or were brought
for treatment; from these findings we cannot estimate the prevalence
of Adjustment Disorders either in the general population or in the ID population.
Individuals from “more disadvantaged life circumstances”
are thought to experience a high rate of stressors and are therefore
thought to be at greater risk for Adjustment Disorders, but even this
premise lacks research support. Any age group can be affected, and
there is no known gender difference in prevalence. The DSM-IV-TR
notes that the individual’s cultural setting—and, in that
context, the nature, meaning, and experience of the stressor—must
be taken into account in judging the intensity of the stressor and
the intensity or maladaptiveness of the response. Adjustment
Disorders are associated with increased risk of suicide.
Issues Related to Diagnosis in People with ID
The important clinical features of Adjustment Disorder are delineated
in the preceding sections and in the DSM-IV-TR. The
flexibility of cultural context noted in the foregoing enables the
clinician to consider the diagnosis in relation to the stressors
typical of the lives of people with ID.
Several DSM-IV-TR clinical criteria present challenges when
the clinician attempts to diagnose Adjustment Disorder in a patient
with ID. First, symptoms must develop “within 3 months of the
onset of the stressor.” Therefore, the stressor must be
identifiable; in the case of a patient with ID, there must be a
reliable source for history. It is important to be aware of the
expected sources of stress in the lives of people with ID, and of the
significance to a person with ID of “stressors” (for
example, the change of vocational supervisor) that would be
considered innocuous in the lives of persons without ID (Levitas &
Gilson, 2001) (Strength of evidence: V). In general, a stressor can
be anything in the life of a person with ID that is beyond the
person’s power to resolve alone (Levitas & Gilson, 2001)
(Strength of evidence: V). The clinician must, therefore, be aware of
the details of changes in the life of the patient.
Many of the stressors that can be expected to precipitate an
Adjustment Disorder are captured in the DSM-IV-TR section:
Other Conditions That May Be a Focus of Clinical Attention (often
called “V codes”). The various Relational Problems,
Problems Related to Abuse and Neglect, and Additional Conditions
(especially Academic Problem, Occupational Problem, and Phase of Life
Problem) can be listed on Axis I along with the Adjustment Disorder,
giving a clear indication of the focus of intervention.
Second, the clinical significance of the reaction is indicated either
by “marked distress that is in excess of what would be
expected” given the nature of the stressor, or by
“significant impairment in social or occupational (academic)
functioning.” It is important to be aware of signs of distress
in a patient with ID and, on the basis of cognitive or adaptive
testing, of the patient’s actual (as opposed to presumed) level
of function. Recognition of the patient’s depressed mood and
anxiety, as expressed in changes in his or her autonomy and
interpersonal relations, is crucial to recognition of the subtypes of
Adjustment Disorder.
Third, the diagnosis should not be used if the disturbance meets
“the criteria for another specific Axis I disorder” (for
example, a specific Anxiety or Mood Disorder) or is “merely an
exacerbation of a preexisting Axis I or II disorder.” An
Adjustment Disorder can be diagnosed in the presence of another Axis
I or Axis II disorder, however, if the latter does not account for
the pattern of symptoms that have occurred in response to the
stressor. This criterion presumes either accurate earlier diagnosis
or a source of history that makes possible a diagnosis of conditions
that existed before the onset of the Adjustment Disorder.
A person’s limited life routines or limited behavioral
repertoire can make it difficult to distinguish an episode of
Adjustment Disorder from the exacerbation of a preexisting disorder.
This is particularly true for people with Severe or Profound ID.
Autistic Disorder is diagnosed on Axis I, ID on Axis II; a limited
behavioral repertoire might lead one to assume that an exacerbation
of symptoms of these developmental disorders does not merit a
diagnosis of an Adjustment Disorder, despite a clear relation to a
stressor. On the contrary, an exacerbation of symptoms of Axis II
disorders, and of Autistic Disorder, can be a sign of an Adjustment Disorder.
Fourth, the diagnosis of an Adjustment Disorder does not apply when
the symptoms represent bereavement. Bereavement is a normal process,
but one for which many people with ID might have little or no
preparation. The death of a family member or a caregiver might be not
only a symbolic loss, but also the loss of a person active in the
care of and advocacy for the patient (Levitas & Gilson, 2001)
(Strength of evidence: V). It is, therefore, difficult to define what
would constitute normal grief expression in a person with ID. It
might be prudent to consider that the loss of favored staff,
housemates, and friends are losses that cause significant grief to
people with ID. Conventional responses to loss might be undetectable
in a person with Autistic Disorder—except as, for example,
catastrophic reactions to the cessation of routine or of scheduled
parental visits.
Fifth, an Adjustment Disorder must resolve within 6 months of the
termination of the stressor (or its consequences). The symptoms might
persist for a prolonged period (that is, longer than 6 months) if
they occur in response to a chronic stressor (for example, a chronic
disabling general medical condition) or to a stressor that has
enduring consequences. It could be argued that the ID itself is a
chronic stressor under this definition (although, as a DSM-IV-TR
diagnostic category, it is not considered a “general medical
condition”). The consequences of accepting this argument would
be to consider every person with ID to have an Adjustment Disorder,
that ID is a “stressor” that can never be integrated into a
successful life, and that it is a constant and unending source of
distress and disability in the same way that, for example, juvenile
rheumatoid arthritis is. Such an argument strains the definition of
Adjustment Disorder without adding anything useful to the
understanding or mental health care of people with ID. It is assumed
that relief from the stressor will result in relief from the mental
health symptoms, an assumption impossible to make about an
irreversible condition that affects life and development from the
earliest days of life.
Nevertheless, ID and its consequences can render an individual more
prone to disturbance by certain types of stressors, most prominently
those calling for novel responses or for responses requiring more
than accustomed or attained levels of autonomy (Levitas & Gilson,
2001) (Strength of evidence: V).
The DSM-IV-TR provides a further description of stressors:
The stressor may be a single event (e.g., termination of a romantic
relationship), or there may be multiple stressors (e.g., marked
business difficulties and marital problems). Stressors may be
recurrent (e.g., associated with seasonal business crises) or
continuous (e.g., living in a crime-ridden neighborhood). Stressors
may affect a single individual, an entire family, or a larger group
or community (e.g., as in a natural disaster). Some stressors may
accompany specific developmental events (e.g., going to school,
leaving parental home, getting married, becoming a parent, failing to
attain occupational goals, retirement).
For people with ID, because each novel life event might demand more
autonomous responses than the individual is able to readily
demonstrate, the stressor does not accompany, but rather it consists
of, the developmental event (Levitas & Gilson, 2001) (Strength of
evidence: V), a situation encompassed by the DSM-IV diagnosis
of Phase of Life Problem.
A stressor might go unnoticed by caregivers, or it might be
unreported by a person with ID who does not want to “rock the
boat” or disappoint caregiver expectations. The clinician must
bear in mind the fact that many stressors in the lives of a person
with ID are beyond the power of the person to change. For example, a
stressful job or a threatening roommate might only be escaped after
prolonged negotiation with caregivers and a caregiving bureaucracy, a
process stressful in itself for a person inexperienced with self-advocacy
or thwarted by an inadequate caregiving system. It is a process that
might be experienced as more stressful than the precipitating
stressor. In addition, moderate to severe levels of personnel
turnover among those who work with the individual can be a recurrent stressor.
Application of Diagnostic Criteria to People with ID
The existing DSM-IV-TR criteria are immediately applicable,
assuming that one has sufficient clinician knowledge of the
subculture of ID (Aman, 1991) (Strength of evidence: IV), as well as
of the modes of expression of anxiety and depression that can affect
people with Borderline, Mild, and Moderate ID. The difficulties in
communication and emotional expression in people with Severe or
Profound ID and in people with Autistic Disorder can restrict the
recognition of the subtypes of Adjustment Disorder to Adjustment
Disorder with Disturbance of Conduct or Adjustment Disorder with
Mixed Disturbance of Emotions and Conduct.
The limits to what can be known about the lives of people with Severe
or Profound ID, and sometimes even with Mild or Moderate ID, in a
regimented and highly defensive caregiving system can obscure the
identification of stressors. Such obscuring might occur, for example,
if abuse or other systemic shortcomings are hidden, or if a chronic
stressor is unrecognized by caregivers who have known the patient for
only a limited time.
The concept of Adjustment Disorder is, however, a very useful and
potentially fruitful one for treating people with ID, affording the
opportunity to remove or ameliorate noxious elements in their lives.
Knowledge of the events in the lives of people with ID that can
precipitate a crisis and a mental health consultation can result in
an accurate diagnosis and a more rapid therapeutic resolution.
Adjustment Disorder or Posttraumatic Stress Disorder—in
particular, Posttraumatic Stress Disorder with Delayed
Onset—cannot be treated successfully unless the precipitating
environmental stressor is relieved. (In addition, acute episodes of
major mental disorders, no matter how appropriate and well tolerated
the pharmacotherapeutic and psychotherapeutic interventions, cannot
be resolved completely without a resolution of the precipitating
developmental crisis.)
Since relief of the stressor is crucial to successful treatment, it
is important to note any applicable V codes (many of which are
immediately applicable to persons with ID) on Axis I along with the
appropriate adjustment Disorder (See Table).
Review of Research Applying to People with ID
Casey et al. (2001) (Strength of evidence: IV) found
“fewer than 30 publications in peer-reviewed journals
exclusively devoted to” Adjustment Disorder from 1975 to 2000. A
search of the MEDLINE and PSYCHLINE medical and psychology databases
using the keywords “Adjustment Disorders,”
“Developmental Crises,” “Life Crises,” or
“Development,” combined with “Mental
Retardation/Developmental Disabilities,” yielded one citation
from 1995 to the present. A similar search of social work databases
yielded 31 citations from 1995 to the present, of which 4 were
relevant (the remainder dealt with adjustment to chronic disease).
Older literature, 1980 to 1995, yielded several papers of at least
some applicability. There appears to have been a loss of interest in
developmental crises in the lives of people with ID, with the sole
exception of the subtopic of sexual abuse, which continues to produce
a rich literature. Podell, Kastner, and Kastner (1996) (Strength of
evidence: IV) note that people with ID are often perceived by others
as less aware and less responsible, and as being less traumatized
than others by sexual exploitation. It is possible that this
observation is equally valid for all types of trauma, and that
sensitivity to the effects of developmental issues on people with ID
might be blunted.
Rautasuo, Talminien, and Salokangas (1999) (Strength of evidence: IV) concluded
that Adjustment Disorder was probably underdiagnosed in the ID
population, but their observations were regarded as equivocal,
requiring further research to assess the effects of stressors.
McCandless, Scott, and Robin (1998) (Strength of evidence: IV), in
their survey of mental health disorders observed in a sample of
patients with del22q- syndrome (Velocardiofacial syndrome, or VCFS),
noted cases of Adjustment Disorder among the diagnoses found. The
patient database of the Division of Prevention and Treatment of
Developmental Disorders, Department of Psychiatry, UMDNJ/SOM, yielded
64 patients with a diagnosis of an Adjustment Disorder in the first
2,144 patients—a rate of 3 percent (Levitas, 2002) (Strength of
evidence: IV). A study of outpatients that compared rates of
Adjustment Disorder in those with normal intelligence to those with
Mild ID to those whose ID ranged from Moderate to Profound yielded
the respective rates of 2 percent (normal intelligence), 1 percent
(Mild ID), and 2 percent (Moderate to Profound ID) (Hurley, Folstein,
& Lam, 2003) (Strength of evidence: IV).
People with ID develop along a path of atypical juxtaposition of
biological, psychological, and social milestones (Levitas &
Gilson, 1994) (Strength of evidence: V). Recent evidence suggests
that most if not all people with ID share a set of executive function
deficits (Garner, Callias, & Turk, 1999) (Strength of evidence:
IV). Both of these phenomena result in a difficulty in coping with
situations that call for novel responses and increased autonomous
functioning. Both, depending upon the intensity of the need, can
cross the line from developmental attainment to developmental stressor.
A system of education and habilitation has been in place for more
than a generation for people with Mild or Moderate ID; the system is
sufficiently pervasive to constitute a subculture (Aman, 1991)
(Strength of evidence: V) in many ways analogous to the subculture
that has grown up around such chronic disorders as HIV/AIDS and
diabetes (Poindexter, 1997) (Strength of evidence: V). This system
creates predictable adaptive challenges, which, depending upon the
strengths and vulnerabilities of the individual involved, can present
new adaptational opportunities or can precipitate a developmental
crisis (Evans, 1983) (Strength of evidence: IV). If unrecognized, the
crisis in turn can lead to an Adjustment Disorder, a Posttraumatic
Stress Disorder—in particular, a Posttraumatic Stress Disorder
with Delayed Onset—or any other major mental disorder, requiring
a mental health consultation. The individual might respond to the
crisis with signs of increased anxiety, but more often he or she will
be brought for a mental health evaluation due to aggression,
self-injury, noncompliance with some externally determined need, or
withdrawal or regression from previous levels of autonomous
functioning—thereby meeting the criteria for, respectively,
Adjustment Disorder with Anxiety, Adjustment Disorder with Mixed
Disturbance of Emotions and Conduct, and Adjustment Disorder Unspecified.
The clinician should not only seek for major mental disorders in the
diagnostic process, but should also rule such disorders out if the
phenomena displayed do not meet DSM-IV-TR diagnostic criteria
(Levitas, Hurley, & Pary, 2001) (Strength of evidence: V). Casey
et al. (2001) (Strength of evidence: V) warn against any
“mechanistic application” of diagnostic criteria—for
example, diagnosing a Major Depressive Disorder episode “if five
or more depressive symptoms have been present for longer than 2
weeks, irrespective of the close temporal relationship between an
identifiable stressor and symptoms”; they note that a
mechanistic application and reliance on formal diagnostic instruments
in epidemiologic studies (eliminating, as they inevitably do,
clinical judgment of the significance of possible causal stressors)
can result in an underdiagnosis of Adjustment Disorder and an
overdiagnosis of a Mood Disorder or an Anxiety Disorder.
The prognostic significance of a diagnosis of Adjustment Disorder
with Depressed Mood is quite different—and considerably more
favorable—than a diagnosis of Major Depressive Disorder. (There
is, however, a question of a more likely progression of a persistent
Adjustment Disorder to a more serious disorder in children and
adolescents, a possibility that has been refuted in two studies:
Kovacs, Gatsonis, Pollock, and Parrone [1994] [Strength of evidence:
IV], and Sohlman and Lehtinen [1999] [Strength of evidence: IV].) A
person without ID will, for the most part, seek care if he or she is
in distress; in contrast, a person with ID, especially one with
Severe or Profound ID, will be brought for evaluation only if his or
her behavior distresses others, perhaps only after a longer exposure
to the causal stressor and a longer period of suffering, with perhaps
even more severe effects upon the person with ID. The major question
of prognosis of Adjustment Disorders in persons with ID must,
therefore, be resolved by further research.
Etiology and Pathogenesis
There is no extant research into the etiology or pathogenesis of
Adjustment Disorders. They are presumed to be exacerbations of, or
perhaps the extreme end of the spectrum of, responses to life stresses.
Risk Factors
As noted in the foregoing text, the psychosocial development of
people with ID (Levitas & Gilson, 1994) (Strength of evidence: V) and
the structure of the caregiving system create stressors in the lives
of people with ID. In fact, some of these stressors are predictable
(Levitas & Gilson, 2001) (Strength of evidence: V) at the
expected developmental transitions in the lives of people with ID. In
general, any situation that requires more coping skills or more
comfort with autonomy than the person possesses is a risk for onset
of an Adjustment Disorder.
Biological Factors
The existence of biological risk factors for Adjustment Disorders has
not been researched.
Psychosocial Factors
It is to be expected that the more nurturing and supportive the
environment, the more comfort the individual under stress will have,
and the more that external coping mechanisms will be mobilized.
Caregivers and caregiving systems with exaggerated expectations or
insufficient support resources, or whose resources are deployed in
directions other than support of the individual under stress, create
a greater risk of Adjustment Disorder. In addition, some personality
structures and Personality Disorders could be expected to create a
greater risk of Adjustment Disorder.
Genetic Syndromes
Connections between genetic syndromes and Adjustment Disorders have
not been researched. It is conceivable that anxiety and dysphoria
levels associated with some syndromes could predispose a person to an
Adjustment Disorder, but any consideration of these levels would have
to be separated from a consideration of the stressors, a near
impossibility. Clinical experience with individuals with Down
syndrome, in which both Depressive Disorders and Anxiety Disorders
are common, suggests no obvious vulnerability to Adjustment Disorders
compared with other people with ID.
Adaptation of Diagnostic Criteria
There are no extant studies of the applicability of DSM-IV-TR
diagnostic criteria for Adjustment Disorder to people with ID. The
following recommendations are based upon clinical experience.
DSM-IV-TR diagnostic criteria for Adjustment Disorders can be
adapted for people with ID with relative ease by adding examples of
stressors relevant to the lives of people with ID and by adding
examples of their manifestations of anxiety, depression, and
disruptive behaviors.
More important is that the clinician modify the ways the clinician
appraises stressors in the lives of people with ID and modifies his
or her clinical practice to detect them. Indeed, Adjustment Disorder
is probably grossly underdiagnosed in the ID population. Symptoms
might be attributed just to “behavior,” or they might be
diagnosed as a Mood Disorder or some other mental disorder. In either
case, the meaning of life stressors would not have been appreciated.
The limitations in applying DSM-IV-TR criteria for Adjustment
Disorder in people with ID are not inherent in the concept of the
disorder or, for the most part, in the criteria. If one accepts the
validity of the category Adjustment Disorder, the major
limitations--or, rather, barriers—to diagnosis are more in the
nature of clinical practice: a mechanistic application of DSM-IV-TR
criteria, a lack of experience with the details of the lives of
people with ID (and thus a lack of knowledge of the impact of some
stressors), the absence of a premorbid and immediate past history,
and a lack of experience in appreciating the signs of anxiety and
depression in people with ID or with Autistic Disorder. Stressors
might be unappreciated by caregivers or hidden by a defensive care
system. The chronic nature of these stressors can serve to conceal
them; they might be thought of as inherent, rather than modifiable,
factors in a person’s life. These same factors can confound the
diagnosis of another Axis I or Axis II disorder, as well as the
development of a superimposed Adjustment Disorder. Bereavement might
be missed or misinterpreted.
Few adaptations are required to the existing DSM-IV-TR
criteria for people with Mild or Moderate ID. The clinician must
clarify the signs of anxiety and depression in both people with Mild
or Moderate ID and those with Severe or Profound ID. The clinician
must delineate the nature of stressors relevant to the lives of
people with ID and obtain examples. Finally, the clinician should
require the specification of a stressor, based on the history from
knowledgeable sources. The clinician can note the nature of the
stressor on Axis IV, but be aware that Axis IV is not normed for
people with ID. It is important to note any applicable V codes
(many of which are immediately applicable to persons with ID) on Axis
I along with the appropriate Adjustment Disorder.
