DM-ID Text Book
Robert Fletcher, D.S.W, ACSW.
Earl Loschen, M.D.
Chrissoula Stavrakaki, M.D., Ph.D.
Michael First, M.D.
We as a Nation have long neglected the mentally ill and the
mentally retarded. This neglect must end, if our Nation is to live up
to its own standards of compassion and dignity and achieve the
maximum use of its manpower.
John F. Kennedy, address to Congress on February 5, 1963
The Diagnostic Manual Intellectual Disability (DM-ID): A
Textbook of Diagnosis of Mental Disorders in Persons with
Intellectual Disability, developed by the National Association
for the Dually Diagnosed (NADD) in association with the American
Psychiatric Association (APA), is a diagnostic manual designed to be
an adaptation of the DSM-IV-TR (American Psychiatric
Association, 2000). Grounded in evidence-based methods and supported
by the expert-consensus model, the DM-ID offers a broad
examination of the topic, including a description of each disorder, a
summary of the DSM-IV-TR diagnostic criteria, a review of the
research and an evaluation of the strength of evidence supporting the
literature conclusions, a discussion of the etiology and pathogenesis
of the disorders, and adaptations of the diagnostic criteria for
persons with Intellectual Disability (ID).
A shorter volume, Diagnostic Manual Intellectual Disability
(DM-ID): A Clinical Guide for Diagnosis of Mental Disorders in
Persons with Intellectual Disability, has been abridged for
clinical usefulness. It focuses on issues related to diagnosis in
people with ID, the limitations in applying DSM-IV-TR criteria
to people with ID, and adaptation of the diagnostic criteria.
The goal of both volumes is to facilitate a more accurate psychiatric
diagnosis of people with ID. Chapters in the DM-ID cover
special issues (i.e., assessment and diagnostic procedures and
presentations of behavioral phenotypes of genetic disorders) as well
as the individual DSM-IV-TR categories. For each disorder,
descriptive text and details of how to apply diagnostic criteria, as
well as tables of adapted diagnostic criteria, are included.
In addition to adapting the DSM-IV-TR diagnostic criteria
where appropriate, the DM-ID provides advice about and
considerations for assessing and diagnosing individuals with ID and
coexisting mental health needs. In some cases, it is not so much that
the criteria need to be adapted, as that a different method of
eliciting the necessary information must be used. Information is
provided in recognizing common behaviors of individuals with
intellectual disabilities and in how to differentiate these behaviors
from psychiatric disorders.
Although psychiatric disorders in persons with Intellectual
Disability (ID) are common, they are often not appropriately
identified (Reiss, 1994). The provision of adequate mental health
treatment for people with ID continues to be lacking (Fletcher,
1993), in part, because reliable psychiatric diagnosis remains a
clinical challenge. Determining an accurate psychiatric diagnosis
becomes especially difficult as the level of intellectual functioning
declines (Rush & Frances, 2000).
Children and adults who have ID coexistent with psychiatric disorders
may be one of the most underserved populations in the United States
(Reiss, Levitan, & McNally, 1982). These individuals may fall
through the cracks in service delivery systems when neither the local
mental health service system nor the developmental disability service
system is willing or able to assume responsibility for their
treatment, services, and support (Reiss, 1994). Individuals with ID
have been estimated to be 2 to 4 times more likely than those in the
general population to experience psychiatric disorders (Eaton &
Menolascino, 1982). Researchers have found that as many as one third
or more of all people with ID have significant behavioral, mental, or
personality disorders requiring mental health services (Nezu, Nezu,
& Gill-Weiss, 1992). Often people with ID who exhibit psychiatric
problems are denied services or receive inappropriate treatment and
services (Fletcher, Beasley, & Jacobson, 1999).
During the past few decades, there have been important developments
in the field of mental health care for people with ID. The National
Association for the Dually Diagnosed (NADD) has been instrumental in
marshaling national and international attention, providing education
and training, and disseminating relevant clinical and policy issues.
In spite of these encouraging developments, however, there remain
significant obstacles hindering appropriate care and treatment for
this underserved population. One key problem is the absence of a
diagnostic system appropriate for clinical use with the diverse
population of people with ID (Sturmey, 1999). As a result,
individuals may receive no psychiatric diagnosis even when a mental
disorder exists, or they may receive an inaccurate or inappropriate
diagnosis. Because treatments, services, and supports are tied
directly to the accurate evaluation and diagnosis of people who have
ID coexistent with mental disorders, the absence of psychiatric
diagnoses is a central issue.
Clinicians need a system whereby they can recognize the presence of DSM-IV-TR-documented
mental disorders in persons who have limited expressive and
receptive language skills. A major potential advantage of the DM-ID
is that it may enhance the reliability of psychiatric diagnoses in
persons with ID which could ultimately improve treatment outcomes.
There are a number of factors associated with the difficulty of
making an accurate diagnosis in people with ID. The applicability of
existing standardized classification systems (such as the DSM-IV-TR)
for persons with ID has been critically debated in professional
literature (Sturmey, 1999). To determine whether a person within the
general population has been experiencing psychiatric symptoms, a
clinician typically relies on the persons description of his or
her experiences and feelings. Individuals with cognitive impairments
experience difficulties in receptive and expressive language to
varying degrees. Mild limitations in cognitive and verbal skills make
it difficult, and severe limitations may make it impossible, for
people with ID to articulate such abstract or global concepts as
depressed mood or to communicate subtle differences among emotional
or motivational states.
Other factors that increase the difficulty in making psychiatric
diagnoses include the tendency for some people with ID to attempt to
hide their disabilities (to adopt a cloak of competence;
Edgerton, 1967), the tendency not to be forthcoming with respect to
self-descriptions, and the tendency for some to try to please the
evaluator by answering falsely or in a manner that is inaccurate
(acquiescence bias). Additionally, the symptoms of
diverse psychiatric disorders are often expressed differently in
people with ID. Sovner (1986) has identified four processes that are
common in persons with ID that can influence the diagnostic
decision-making process: baseline exaggeration, intellectual
distortion, psychosocial masking , and cognitive disintegration.
Another diagnostic challenge is diagnostic overshadowing (Reiss,
Levitan, & Szyszko, 1982). Having a diagnosis of ID can
overshadow coexisting mental disorders and may predispose
practitioners to overlook the presence of psychopathology, because
unusual or anomalous behavior is attributed by the clinician to being
artifacts of developmental or social delay. For example, a
person with Profound ID who is very withdrawn and asocial might be
less likely to be labeled as depressed than would a person with
average intelligence (Sturmey, 1999).
Accurate diagnosis is important because it provides a sound basis for
effective treatment. As Szymanski and his colleagues point out, for
many patients and their families diagnostic understanding will reduce
confusion and uncertainty (Szymanski, King, Goldberg, Reid, Tonge et
al., 1998). Positive treatment outcome is based on an accurate
diagnosis. Just as this is true concerning physical health, it is
equally true in psychiatric health.
Severe behavioral disturbance in the form of verbal or physical
aggression toward others, self-injury (aggression toward self), and
property destruction frequently motivates referrals for diagnosis and
treatment prescription. Such severe disturbance occurs at a
clinically significant rate among people with ID, often threatens the
stability of family living or the continuation of community living in
a relatively nonrestrictive setting, and can precipitate admission to
a public mental health or ID facility. Severe behavioral disturbance
of various types occurs among people with Mild to Profound ID.
However, it is important to understand that severe behavioral
disturbances are not part and parcel of a diagnosis of ID. The
presence of clinically significant behavioral disturbances mandates a
thorough clinical diagnostic evaluation to determine the presence of
comorbid mental disorders that may be responsible for the behavioral
disturbance. The extent to which behavioral disturbances represent
symptom equivalents for symptoms such as depression and anxiety,
especially in individuals with Severe and Profound ID, has been the
subject of considerable debate, which remains to be elucidated by
Classification and Diagnosis of Mental Illness
The clinician is faced with certain challenges when an individual
with ID presents with disturbed or disturbing behavior. Since at
least as long ago as early Greek civilization, it has been
acknowledged that not all abnormal behavior arises from a single,
unitary cause. People might behave similarly or differently for
a number of reasons, and knowing the specific reasons can be helpful
not only in explaining the disturbing behavior but also in
constructing an intervention that might alleviate the behavior. This
is the reason that we attempt to classify behavior into discrete
groupings, including syndromes.
Since the time of early Greeks, then, there have been a multitude of
systems of nomenclature for mental disorders, each based upon
underlying concepts of causation. Each of these systems was limited
by the underlying theoretical and philosophical framework used to
construct the system. It became increasingly difficult to clearly
describe behaviors in terms that had some sort of common acceptance.
At the beginning of the twentieth century, Emil Kraepelin, a German
psychiatrist, developed a systematic classification based upon
manifest, observable behavior (Alexander & Selesnick, 1966). This
classification system enabled psychiatrists from many different
places to describe psychiatric disorders in a manner that could be
duplicated elsewhere. Because the system was based on observable
behavior, the theoretical approach of the psychiatrist would not
determine the way he or she characterized the particular psychiatric disorder.
In the mid-twentieth century, the American Psychiatric Association
(APA) published the Diagnostic and Statistical Manual of Mental Disorders (DSM)
(American Psychiatric Association, 1952) as a systematic
document containing descriptions of each of the disorders contained
within this classification system. Although this system used the
terminology of reactions and syndromes, there
was a clear effort to describe various disorders in behavioral and
observable terms. In 1968, the DSM-II (American Psychiatric
Association, 1968) eliminated the terminology of reactions
in favor of such terms as Anxiety, Neurosis, and Schizophrenia, but
in general there were few changes in the overall structure. Starting
with the DSM-III in 1980 (American Psychiatric Association,
1980), diagnostic criteria sets were developed for each disorder,
based whenever possible on observable phenomena. The DSM-III-R (American
Psychiatric Association, 1987) and the DSM-IV (American
Psychiatric Association, 1994) introduced some changes in individual
categories, but in general the basic framework remained relatively unchanged.
The DSM diagnostic criteria are constructed to be
generic; that is, they should ideally be applicable to
all patient populations, independent of the patients age,
ethnicity, culture, gender, or the presence of comorbid medical or
mental conditions. There have been many critiques of the DSM, however,
arguing that developmental issues, cultural context, and other
factors can affect the symptomatic expression of disorders.
Additionally, there has been controversy found in the literature
concerning the issue of reliability in making specific DSM-IV-TR
diagnosis in persons with ID, especially those with more severe
impairment (Einfeld & Aman, 1995). Mickkelsen and McKenna (1999)
assert that as intelligence decreases the validity of psychiatric
diagnosis for individuals with ID tends to decrease. They explain
this as the result of both an increase in nonspecific organic factors
and the relative inaccessibility of the individuals inner life
as productive speech decreases with the increased severity of
impairment. Noting a general consensus that mental disorders can be
diagnosed using standard diagnostic criteria for people with Mild ID
and reasonably good communicative skills, Szymanski and colleagues
acknowledge the increased difficulty for individuals with more severe
ID and poor verbal skills. Some people with severe [ID] can be
diagnosed using DSM-IV criteria that are modified to reflect
their impairments and life circumstances, whereas others show
patterns of symptoms and aberrant behaviors that cannot be easily fit
into DSM-IV criteria for a specific mental disorder
(Szymanski et al., 1998, p. 5).
In fact, the DSM-IV-TR itself recognizes that some diagnostic
criteria need to be modified when they are applied to children, both
because the symptom profile of some disorders differs in children
(for example, the substitution of irritable mood for
depressed mood in the diagnostic criteria for Major
Depressive Episode and Dysthymic Disorder in children) and because
some diagnostic criteria do not apply to children (for example, there
is no requirement in Specific Phobia descriptions that children
recognize that their fears are excessive or unreasonable). Although
criteria set modifications have been proposed for different cultural
groupsfor the medically ill and for geriatric patients among
others, as well as those for childrenno other modifications are
included in the DSM-IV-TR.
The DM-ID is not the first attempt to improve the diagnosis of
mental disorders in individuals with ID. The Royal College of
Psychiatrists in 2001 published a guide entitled DC-LD [Diagnostic
Criteria for Psychiatric Disorders for Use with Adults with Learning
Disabilities/Mental Retardation] (Royal College of Psychiatrists,
2001). The DC-LD is a classification system that has been
developed in recognition of limitations of the ICD-10 Manual
published by the World Health Organization (WHO, 1992) and in its
place the DC-LD reflects a consensus of current practice and
opinion among psychiatrists from the United Kingdom and Ireland who
specialize in ID (referred to there as learning disabilities).
The DC-LD provides operationalized diagnostic criteria for
psychiatric disorders and is intended primarily for use with adults
with Moderate to Profound ID. Generally, the DC-LD lists the
corresponding ICD-10 and DSM-IV-TR codes for mental disorders.
The DC-LD uses a different multi-axial system than the DSM-IV-TR
or the ICD-10.
Preparation of the DM-ID
In 1998, Robert Fletcher, D.S.W., A.C.S.W., founder and CEO of NADD,
submitted a proposal to the NADD Board of Directors with the concept
of developing a companion to the DSM-IV to be used to
facilitate a more accurate DSM-IV diagnosis for people with
ID. He was subsequently appointed Chief Editor to develop,
coordinate, and edit this manual, and he appointed Earl Loschen,
M.D., Chrissoula Stavrakaki, M.D., Ph.D., and Michael First, M.D. as co-editors.
All major diagnostic categories of mental disorders as defined in the DSM-IV-TR
are covered in the DM-ID. For each of these diagnostic
categories, a lead person functioned as a chairperson. Each of these
chairpersons is an expert in the specific diagnostic category under
study, and each has made significant contributions to the field. Each
chairperson selected a working committee, generally consisting of
three to five experts in the field of dual diagnosis, to write a
chapter on a specific diagnostic category.
A major thought in writing the DM-ID was the assumption that
there was a need to develop adaptions of DSM-IV-TR criteria.
The editors envisioned that there would be a need to develop two
adapted criteria (one for Mild/Moderate ID and other for
Severe/Profound ID), each correlated with the DSM-IV-TR
criteria. However, as the process has moved forward in the
development of this Manual, the editors came to realize that in many
diagnostic categories, there is no need to have separate columns for
Mild/Moderate and Severe/Profound. In fact, the editors identified
that in many diagnostic categories, there is no need for a modified criteria.
A guideline was developed to structure the diagnostic chapters,
allowing for clarity and uniformity. The diagnostic chapters in the DM-ID
generally follow this guideline. The primary elements of the
guideline are listed below.
Review of diagnostic criteria
General description of the disorder
Summary of DSM-IV-TR criteria
Issues related to diagnosis in people with ID
Application of diagnostic criteria to people with ID
Methodology of literature search
Review of research applying to people with ID
Evaluating the level of evidence using the Cochrane method
Adults with Mild to Moderate ID
Adults with Severe or Profound ID
Children and adolescents with ID
Summary of limitations in applying DSM-IV-TR criteria to people with ID.
Etiology and pathogenesis
Adaptation of diagnostic criteria
Table of adapted criteria
Obsessive-Compulsive Disorder and Post-Traumatic Stress Disorder
This book diverges from the arrangement of mental disorders in the DSM-IV-TR
for Obsessive-Compulsive Disorder and Post-Traumatic
Stress Disorder. In the DSM-IV-TR these disorders appear in
the chapter on Anxiety Disorders. Here, though, both because
of their importance in the ID population and because they are
frequently underdiagnosed, Obsessive-Compulsive Disorder and
Post-Traumatic Stress Disorder are each assigned their own chapter.
There is a general dearth of research in the area of co-occurring ID
and mental illness. Because many pertinent questions
encountered in everyday practice are not well answered by the
available research, expert consensus is a valuable bridge between
clinical research and clinical practice (Frances, Kahn,
Carpenter, Frances, & Docherty, 1988). In the absence of
research, the collective opinion of experts is considered a useful
and appropriate guide. For this reason, the authors of the DM-ID
relied upon an expert consensus model in their work.
Grounded in the expert consensus model, each chapter grew out of a
critical review of the literature. All authors on a team reviewed and
commented upon each others written contributions, resulting in
changes and improvements. The entire manuscript was submitted to
seven experts for peer review (see list of External Peer Reviewers at
front of book). From their comments further changes were made. The
decision to release a version of the DM-ID abridged for easy
use by clinicians grew out of feedback from the peer reviewers. An
Advisory Board (see list of Manual Advisory Board at front of book)
was created to provide guidance, review, and feedback. Thus, the
Advisory Board acted as a further peer review process, which resulted
in further changes and refinements to the chapters. The editors and
authors revised several drafts of each chapter incorporating the
suggestions made by the peer reviewers.
Evidence-Based Approach to Diagnostic Decision Making
Within the field of ID, several proposals have been made over the
past 20 years for modifying diagnostic criteria for mental disorders
generally or under specific circumstances (Clarke, Cumella, Corbett,
Baxter, Langton, et al., 1994; Scotti , Morris, McNeil, &
Hawkins, 1996; Sovner & Hurley, 1982a, 1982b; Sturmey, 1993). One
of the quandaries presented by such recommendations is that, though
they might be consistent with clinical experience, they might differ
or be contradictory, and they might not have been tested for validity
against standards that are similar and consistent in breadth and
depth across diagnostic categories.
In the development of diagnostic systems and practice guidelines,
consensus committees, consisting of experts, researchers, and
practitioners, have been formed for various topics in medicine and
behavioral healthcare. Consensus methods were an important aspect of
the development of all editions of the DSM, and these methods
have been applied within the field of developmental disabilities with
respect to practice issues centering around the use of psychotropic
medications (Reiss & Aman, 1998), integration of psychotropic
medication and other treatments (Reiss & Aman, 1998), and
diagnosis and intervention for autism spectrum disorders (New York
Department of Health [NYDOH], 1999a, 1999b, 1999c).
Narrative reviews of the scientific literature are another ostensibly
more objective way of resolving issues, but detailed reviews by their
nature may be highly focused on more narrow concerns, and more
comprehensive reviews may lack the depth that enables them to stand
as definitive in their own right.
Evidence-based methods have been developed to resolve the limitations
of the expert consensus method. First, the review process is made as
explicit as possible, using standardized methods of literature
search, selection, and exclusion. Second, the criteria used to judge
the value and applicability of the research literature to the
question are standardized. Finally, the basis of the conclusions
drawn from the literature are categorized with respect to whether
such conclusions are firmly grounded in numerous high-quality and
relevant research studies (or in only a few of such studies), or
whether, in the absence of adequate, pertinent research, the
conclusions reflect the consensus of a committee.
Although evidence-based appraisals of diagnostic and treatment
practices consistently rely on levels of evidence
(reflecting the quality of the research or clinical findings), the
standards used are similar, but not identical, among various
evidence-based projects or initiatives (Cochrane Library, 2001;
NYDOH, 1999a). The Cochrane Library (2001) has used the following
five levels of evidence to evaluate treatments for mental health disorders:
Type I evidence: good systematic review and
meta-analysis (including at least one randomized control trial;
·Type II evidence: a randomized control trial;
·Type III evidence: a well-designed intervention study
·Type IV evidence: well-designed observational studies; and
·Type V evidence: expert opinion, influential reports,
Each of the diagnostic committees that developed a chapter in the DM-ID
has indicated the strength of evidence for each conclusion in the
chapter by using the Cochrane Librarys five levels of evidence.
This manual offers clinicians an evidence-based literature review of
the existing DSM-IV-TR criteria with adaptations in a tabular
format. The editors hope that the reader will find this presentation
comprehensive, informative, and easy to follow. The editors also hope
that those readers who serve persons with ID and mental health
problems will be able to more accurately identify and diagnose mental
illness in this group with less bias of overinclusion or underinclusion.
Terminology: Intellectual Disability (ID) versus Mental
The editors of this the DM-ID recognize that the use of terms
to describe individual differences in cognitive abilities is
controversial. The DSM-IV-TR uses the term Mental
Retardation to denote disabilities of this nature, but this term
has fallen into disfavor in many areas. In much of Europe and Canada
as well as in the United States, the term Intellectual Disability
(ID) is used with increased frequency in some circles. In 2007,
the American Association on Mental Retardation (AAMR) changed its
name to the American Association on Intellectual and Other
Developmental Disabilities (AAIDD). The Journal of Intellectual
Disability Research (JIDR) was formally the Journal of Mental
Deficiency Research. The Presidents Committee on Mental
Retardation (PCMR) has changed its name to the Presidents
Committee for Persons with Intellectual Disabilities (PCPID).
Nonetheless, the term Mental Retardation is still used in some
areas of the United States for insurance and billing purposes. Furthermore,
the term Learning Disability is used in the United Kingdom
and is synonymous with the terms Mental Retardation and Intellectual
There is a growing movement toward acceptance of the term Intellectual
Disability (ID). To ensure consistency in this manual, the
editors have chosen to use this term, recognizing that terms change
over time. The editors hope this decision will advance the
international usage of the term and influence the professional and
consumer communities to further embrace the term Intellectual Disability.
Field Testing of the DM-ID
During the summer of 2006, field trials of the abridged DM-ID (Diagnostic
Manual Intellectual Disability: A Clinical Guide for
Diagnosis of Mental Disorders in Persons with Intellectual
Disability) were held to assess its clinical usefulness. A data
set of nearly 900 subjects was obtained. Sixty one percent of these
were male and thirty nine percent were female. The level of ID was
divided fairly evenly between Mild, Moderate and Severe/Profound.
Approximately 80 clinicians from eleven different countries (see list
of Field Trial Participants at front of book) provided feedback on
their experience using the DM-ID. Questions were asked such as
whether the DM-ID enabled the clinician to come up with a more
specific diagnosis than he or she would have arrived at with the DSM-IV-TR,
whether the DM-ID was user friendly, and whether the DM-ID
allowed the clinician to arrive at a psychiatric diagnosis that the
clinician thought was appropriate for the patient among other survey questions.
A Research Committee has been organized to analyze the data and
report the results. Preliminary results appear positive. Clinicians
found that, with a significant number of subjects, the DM-ID allowed
them to come up with a more specific diagnosis than they would have
using only the DSM-IV-TR. With a majority of the subjects, the
clinicians found the DM-ID to be user friendly and clinically
useful, and, with an overwhelming majority of subjects, they
indicated that the DM-ID allowed them to arrive at a
psychiatric diagnosis that they think is appropriate for the
individual being diagnosed.
The Field Trial Participants provided many insightful and useful
comments. Some of these were incorporated into improvements of this
edition of the DM-ID; others will contribute to a later
revision when this book is re-issued.
In addition to aiding clinicians in their work with individuals with
ID and coexisting mental health problems, the Editors hope the DM-ID
will stimulate research.
The Diagnostic Manual Intellectual Disability (DM-ID): A
Textbook of Diagnosis of Mental Disorders in Persons with
Intellectual Disability is designed to provide state-of-the-art
knowledge of mental disorders and ID. It provides a series of
chapters that corresponds closely to the DSM-IV-TR classification
system, with specifically proposed adaptations of the existing
criteria to make them apply to persons with dual diagnosis. The
authors of the chapters were selected largely from among
professionals who had made international contributions to the field
of dual diagnosis. The DM-ID, therefore, represents a
multicentered, multicultural, and multifaceted collaborative effort
of many experts, an effort aimed at an improved understanding of
mental disorders and their unique expressions in persons with ID.
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