Diagnostic Criteria

Journal of Intellectual Disability Research
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Blackwell Science, LtdOxford, UKJIDRJournal of Intellectual Disability Research

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Blackwell Science Ltd,

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Supplement

1

Original Article

DC-LD and the diagnosis of anxiety disorders

N. M. Bailey & T. M. Andrews

Correspondence: Dr N. M. Bailey, Fiveways Resource
Centre, Ilchester Road, Yeovil, Somerset BA

z1

BB, UK
(e-mail: Nicola.Bailey@sompar.nhs.uk).

Diagnostic Criteria for Psychiatric Disorders for Use with
Adults with Learning Disabilities/Mental Retardation

(DC-
LD) and the diagnosis of anxiety disorders: a review

N. M. Bailey

1

& T. M. Andrews

2

1

Somerset Partnership NHS and Social Care Trust, South Somerset Community Team for Adults with Learning Disabilities, Yeovil,
Somerset

2

Oxfordshire Learning Disability NHS Trust, Headington, Oxford UK

Abstract

Background/Methods

During the development of

Diagnostic Criteria for Psychiatric Disorders for Use with
Adults with Learning Disabilities

[DC-LD] a literature
review of diagnostic issues in anxiety disorders in
adults with intellectual disability (ID) was undertaken
using electronic and hand searching of journals.

Results

Relevant general concepts in the general
population are reviewed briey before those related
specically to adults with ID. The literature relating
to the diagnosis of specic anxiety disorders is
reviewed, although with the exception of obsessive
compulsive disorder this consists mainly of case
reports. Difculties in the use of diagnostic systems
developed for the general population for the diagnosis
of anxiety disorders in adults with ID are frequently
commented upon.

Conclusions

It is concluded that anxiety disorders
are well recognized in adults with ID, although their
prevalence is uncertain, and that the use of modied
diagnostic criteria may aid further research in this
area.

Keywords

adults, anxiety disorders, diagnosis,
mental retardation

Introduction

This literature review was part of the work undertaken
to develop Diagnostic Criteria for Psychiatric Disor-
ders for Use with Adults with Learning Disabilities
[DC-LD] (Royal College of Psychiatrists

zoo1

) and
so its focus is on the assessment and diagnosis of
anxiety disorders in adults with ID, rather than the
treatment of such disorders. The concept of anxiety
disorders for the purpose of this review is largely that
in the section neurotic and stress related disorders of
DC-LD (corresponding to the block neurotic, stress
related and somatoform disorders of the Interna-
tional Classication of Mental and Behavioural Dis-
orders [ICD-

1o

] (WHO

1z

). However, literature
relating to acute stress reactions, adjustment disorders
and post-traumatic stress disorder will not be dis-
cussed here. Similarly, literature regarding the presen-
tation of anxiety disorders in children is not included.

Classication

The problem of classifying anxiety disorders in the
general population disabilities is far from easy. This,


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in part, relates to the fact that anxiety is a symptom
that may occur in a number of clinical syndromes that
probably have a heterogeneous aetiology. It is com-
plicated further by the fact that anxiety is a universal
experience which only becomes pathological when its
extent or degree exceeds a certain threshold. Bond

et al

. (

1;(

) concluded that pathological anxiety
involved an increase in arousal that was irrelevant to
a given task and had a disorganizing rather than facil-
itating effect on performance.

Evolutionary perspective

It is highly likely that anxiety and fear are adaptive
responses that have developed through evolution over
a long period of time. For this reason, fears of snakes,
spiders, high or open spaces are more common than
fears of cars or cigarettes, although the latter are
responsible for more deaths in modern society. There
is evidence that anxiety responses are present from
an early stage in development. However, it is more
difcult to dene when these responses become
excessive or pathological. When fear is aroused by an
immediate threat (for example being attacked) then
increased sensitivity to warning cues is obviously
adaptive. Oversensitivity of these mechanisms in
the absence of immediate threat is one possible
mechanism underlying pathological anxiety states
(Mathews

1

).

Biological aspects

A number of neurotransmitters have been implicated
in the aetiology of anxiety, most notably

-HT (Iverson

18(

), noradrenaline (Sevy

et al

.

18

) and GABA
(Crestani

et al

.

1

). It has been postulated that
functional anatomy of anxiety involves amygdala-based
neurocircuits with critical reciprocal connections to
the medial prefrontal cortex. Traumatic experiences
may leave emotional imprints involving the amygdala,
with facilitated fear-conditioned associations involving
declarative memory traces (Ninan

1z

).

Psychological theories

Beck & Clark (

188

) proposed that anxiety disorders
resulted from dysfunctional schemas derived from
past learning experiences of an individual. For exam-
ple, people with panic disorder tend to misinterpret
bodily sensations as a sign of immediate catastrophe
(Clarke

186

) and thus have assumptions about the
dangerous nature of bodily functions.
Wells & Matthews (

1(

) proposed a dual level
theory of information processing. Lower level pro-
cessing occurs automatically and involuntarily with
little limit on attentional capacity. Upper level, or
controlled, processing involves a plan or strategy and
is limited by attentional resources. How these theo-
ries apply to people with ID is not discussed, but
many cognitive theories of anxiety disorders may be
difcult to apply to people with more severe ID.

Prevalence

There is little doubt that anxiety disorders exist in
people with ID (McNally & Ascher

18;

). How they
have been diagnosed and classied together with the
populations studied leads to considerable variations
in the rates reported from

o

.

6

% (Crews

et al

.

1(

)
to

;

.

% in an institutional population for anxiety
disorders diagnosed by Psychopathology Instrument
for Mentally Retarded Adults [PIMRA] and DSM-
III (American Psychiatric Association

18o

, Linaker
& Nitter

1o

).
Many studies fail to make a denite diagnosis and
report only the prevalence of anxiety symptoms,
which range from

6

% (Ballinger

et al

.

11

) to

1

%
(Reiss

1o

). With more severe ID only behavioural
symptoms can be assessed reliably and this often
makes it difcult for all the criteria of an anxiety
disorder to be met (Matson

et al

.

1;

).

Method

Electronic searching

A computerized literature search was undertaken
using the databases PsychINFO and Medline for
English language articles up to October

zooo

.

PsychINFO

The following strategy was employed: [(explode
mental retardation) or (ment* retard*)] and
(explode anxiety disorders).

Medline

The following strategy was used: [(explode mental
retardation/all subheadings) or (mental retardation)]
and (explode anxiety disorders/all subheadings).




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Handsearching

In addition the following journals for the last

1o

years
were searched by hand for articles relevant to diag-
nosis of anxiety disorders in adults with ID:

Journal
of Intellectual Disability Research

,

American Journal on
Mental Retardation

,

Journal of Nervous and Mental
Disease

,

British Journal of Psychiatry

,

Irish Journal of
Psychological Medicine

,

British Journal of Developmen-
tal Disability

,

Psychological Medicine

,

Journal of Applied
Research in Intellectual Disability

,

Journal of Intellectual
and Developmental Disability

,

Mental Retardation

,

British Journal of Learning Disabilities

and

Psychiatric
Bulletin

.
Relevant articles cited in those found by this
method were also included. Articles that did not refer
to adults with ID were excluded.

Results

From the electronic search strategy,

zoz

papers were
found. A further

z8

papers were found from hand-
searching. From looking at the abstracts, papers that
were considered to be relevant were requested. After
further discussion between the authors,

(

of the
total

zo

papers were nally felt to be relevant to this
review. Included articles referred either to assessment
or diagnostic issues, or to specic anxiety disorders
if no other articles were available on that disorder.
The included studies have been subdivided into those
that mention diagnostic issues in anxiety disorders
and ID and those that refer to subcategories of anx-
iety disorders in adults with ID.

Diagnostic issues

Diagnostic overshadowing

It was proposed by Reiss and colleagues in the

18o

s
that clinicians were much less likely to recognize
additional psychiatric disorders when they presented
in people with ID. The term they used for this con-
cept was diagnostic overshadowing, and it was sug-
gested that it occurred in two ways: rst, that the
clinicians did not notice the features of an additional
psychiatric disorder in people with ID because the
features of intellectual impairment were so over-
whelming; and secondly, that when the features were
noticed, they were wrongly attributed as being part
of the persons ID rather than an additional psychi-
atric disorder (Reiss

et al

.

18z

). They investigated
this experimentally by means of vignettes sent to
clinical psychologists, one of which involved a man
with a simple phobia, precipitated by a stressful
event. They showed that a phobia was signicantly
less likely to be diagnosed if the vignette involved a
man with ID rather than a man from the general
population. The terms neurotic, irrational, emo-
tionally disturbed and psychotic were found to be
applied signicantly less frequently in the case of the
person with ID. In a later study, Levitan & Reiss
(

18

) used the same vignettes and showed that this
phenomenon was demonstrated equally by psychol-
ogy students as with social work students and hence
was general across professional disciplines. Although
the robustness of these ndings and the proposed
mechanisms for the development of the phenomenon
have been challenged (Spengler

et al

.

1o

) a meta-
analysis of studies on diagnostic overshadowing has
conrmed its existence, although its effect was found
to be small to moderate (White

et al

.

1

). DC-LD
is a multi-axial diagnostic system. It adopts a hierar-
chical approach both through and within axes. Each
axis is considered in turn. For example, if a disorder
on Axis I

-

Severity of Learning Disabilities does not
account for the whole presentation of the individual,
Axis II disorders

-

Cause of Learning Disabilities is
considered. This process continues through to Axis
III

-

Psychiatric Disorders, and then between the lev-
els within Axis III. Such a hierarchical approach to
diagnosis may reduce the effects of diagnostic over-
shadowing, by obliging the clinician/researcher to
account for symptoms in this structured way.
Although the ICD-

1o

Guide for Mental Retardation
(World Health Organization

16

) also has multiple
axes, it does not adopt a hierarchical approach.

Developmental appropriateness

The types of fears experienced by adults with ID and
its relationship with developmental level has been
investigated. Sternlicht (

1;

) studied the self-
reported fears of

zz

adults with moderate ID. He
found that at this developmental age (approximately

6

years) fears of the supernatural and of animals
predominated (

6

% of reported fears), while fears
relating to physical injury and psychological stress
made up

z

% of reported fears. He concluded




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Journal of Intellectual Disability Research qy (Suppl. 1), o61
that the developmental trend that occurs around
;8 years of age in which there is replacement of
Piagets stage of preoperational thinking (represented
by fears such as those concerning ghosts, thunder and
animals) with concrete operational thinking (repre-
sented by more realistic fears, e.g. for personal safety
or psychological stress) seen in normal children is
seen in adults with ID at a similar developmental level.
Duff et al. (181) compared zo adults with mild ID
and verbal skills with zo children without ID matched
to sex and mental age and zo adults without ID
matched for sex and chronological age. An 8-item
modied Fear Survey Schedule (Wolpe & Lang 16()
was administered to all groups. Adults with ID
reported fear signicantly more frequently than
adults without ID and signicantly less frequently
than children without ID. Types of fears were more
similar to the mental age-matched control children
than chronological age-matched adults. Adults with
ID were more often fearful of the following compared
with chronological age matched controls (adults
without ID): thunder and lightning, cemeteries, hav-
ing sex with a man or a woman, crossing streets, hell,
being kidnapped, being touched by others and germs.
Compared with the mental age-matched controls,
more adults with ID reported fear of doctors and
more children reported being fearful of being left out
and dark places.
Pickersgill et al. (1() compared o adults
recruited from ID day centres and thereby assumed
to have ID with o adults recruited from libraries,
cafes and a launderette matched for age, sex and
parental occupation. A modied Fear Survey Sched-
ule (Wolpe & Lang 16() with intensity of fear lim-
ited to a three-point scale was used in written form
for the non-ID group and administered verbally for
the ID group. Four people with ID were excluded
due to poor comprehension. The ID group were
found to have had higher mean fear rating than the
non-ID group and the mean intensity of rating for all
fear groups except social rejection (i.e. agoraphobic
fears, fears of tissue damage, sex and aggression or
animal fears) was signicantly greater in the ID group
than in the non-ID group. This difference was most
marked for animal- and tissue damage-type fears.
Although in the non-ID group the usual gender dif-
ference of female gender being associated with
greater reporting of fears, this was not observed in
the ID group.
The authors discuss aetiological factors that may
have contributed to the ndings of greater levels of
fear in the ID group. They comment that socio-
economic factors are unlikely to be contributory,
given the close matching of parental occupations of
the two groups. They suggest that the world is more
dangerous in some ways for people with ID than for
those without ID for activities such as crossing the
road, but consider that such examples are unlikely to
account for the overall raised intensity of fear across
the fear types in the ID group. They speculate that
poorer linguistic skills are inuential in two ways: rst
by resulting in greater difculties in discussing
explaining and moderating or dismissing such
fears when they do arise, and secondly by limiting
discrimination at a verbal level resulting in over-
generalization. They also discuss that over-
protection, both parental and institutional, could be
relevant, allowing a pattern of learned dependence
and hence the development of avoidance as a coping
mechanism. It is suggested that the lack of gender
difference in the ID group is due to relative discour-
agement of the display of masculine characteristics by
men with ID due to their social environment.
It is important to note that none of the three stud-
ies cited in this section are commenting on clinically
signicant phobias, but rather on self-reported fears,
although the ndings are probably relevant to the
content of the phenomenology seen in phobias in
adults with ID.
Behavioural equivalents
The description of behaviour problems being a
manifestation of anxiety disorders is limited to
case reports and professional opinion. Khreim &
Mikkelsen (1;) comment on the increase in diag-
nostic weight that needs to be given to behavioural
phenomena in the diagnosis of anxiety disorders in
adults with ID compared with the general popula-
tion. They give the example, among others, of fear
being manifest as agitation, screaming, crying, with-
drawal, freezing, or regressive clingy behaviour.
Allen 18) reports two studies in which the fre-
quency of aggressive and self-injurious behaviour in
two individuals (described as having moderate and
profound ID) has been reduced by the teaching of
behavioural anxiety reduction techniques, including
muscular relaxation. Ellison (1;) reports a case of
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N. M. Bailey & T. M. Andrews DC-LD and the diagnosis of anxiety disorders
54
zoo Blackwell Publishing Ltd, Journal of Intellectual Disability Research qy (Suppl. 1), o61
a young woman with severe ID and generalized anx-
iety disorder, panic attacks and agoraphobia who pre-
sented with behavioural phenomena of hiding her
face, crying, pulling away, refusing to get up from the
oor, crouching in the corner, screaming, hid-
ing . . . refusing to leave home, frequent urination
and smearing of faeces and mucus. Erfanian &
Miltenberger (1o) describe two male adults with
profound and moderate ID who had a phobia of dogs
and who had placed their lives in jeopardy by the
behavioural response to their fear by running across
roads when seeing a dog unexpectedly. Perry (1o)
reports a young woman who presented with chal-
lenging behaviours including self-injury, screaming
and moaning, pushing staff, attempting to get out of
the vehicle and vomiting as a manifestation of fear
of travelling in cars and minibuses. DC-LD has
addressed the issue by allowing the individual with
ID either to describe fear or stating that his or her
expression or behaviour may demonstrate anxiety or
fear. Irritability due to anxiety or fear (e.g. physical/
verbal aggression) is included as one of the readily
observable symptoms that can be used to make a
diagnosis of generalized anxiety disorder [GAD], the
phobias and panic disorder in DC-LD. In the litera-
ture on obsessive compulsive disorder [OCD] in
adults with ID there is frequent reference to anger or
aggressive behaviour occurring when attempts are
made by observers to prevent compulsions being car-
ried out (Vitiello et al. 18 McNally & Calamari
18; Prasher & Day 1; Middleton & Cooper
1;). This phenomenon has been included as one
of the criteria for OCD in DC-LD.
Subcategories of anxiety disorder
Agoraphobia
Agoraphobia probably occurs at a rate of about 1.(%
in adults with ID (Cooper 1;) but there is little
published on agoraphobia in this population. Wais-
bren & Levy (11) describe ve case reports of
adults with phenylketonuria [PKU]. Of these, two
did not have ID and one appeared to have depression
as a primary diagnosis rather than agoraphobia. The
two remaining adults had mild ID, PKU and agora-
phobia, one of whom responded to the reintroduc-
tion of a phenylalanine free diet after failure of drug
treatment with clonazepam and propanolol. There is
no comment made on diagnostic issues in adults with
learning disabilities and the study used self-report
questionnaires devised for the general population,
e.g. the Trait Anxiety Scale (Spielberger et al. 18),
without comment on the appropriateness of this for
people with ID. Ellison (1;) described a woman
with generalized anxiety disorder with symptoms of
panic attacks and agoraphobia. In this case descrip-
tion, the authors make the comment that autonomic
symptoms of anxiety (for example, sweating and
trembling) were observed when she left the home. As
she did not speak, it was not possible to obtain a
description of her internal state. This problem was
considered in the development of DC-LD, which
allows either the observation of symptoms of anxiety
to the phobic situation or the individuals subjective
description of these symptoms. In addition, the more
complex conceptual phenomena such as depersonal-
ization/derealization that are included in the list of
symptoms in ICD-1o Diagnostic Criteria for
Research (World Health Organization 1) are
replaced by increased irritability and increased
restlessness.
Social phobia
There are no prevalence studies or specic discussion
of diagnostic issues the authors could nd that com-
ment directly on social phobia. Matson (181)
assigned randomly z( people with mild to moderate
ID and social phobia into a behavioural treatment
group and a non-treatment group. The treatment
group appeared to do signicantly better. Chiodo
& Maddux 18) reported two people with mild ID
and social phobia improved with psychological
treatments.
Symptoms of social anxiety have been commented
upon particularly in people with fragile X. Maes et al.
(1) found up to 6o% of people with fragile X
showed shyness, bashfulness or timidity in social sit-
uations and around (o% withdrew or avoided social
situations. This group of people did not show signif-
icantly more autistic behaviour than a control group
of people with ID without autism.
Specic phobia
Novosel (18() reported that of adult admissions
to an institution in Scotland over a 6-month period
were found to have additional psychiatric symp-
55
toms. Fifty-eight per cent of this group had phobic
symptoms of clinical severity, making it the most
common symptom reported. Fear of the dark was the
most common phobia. Cooper (1;) reported that
6.8% of a sample of a community population aged
zo6( years had phobias other than agoraphobia,
although this includes people with social phobia. A
number of authors have speculated on aetiological
factors in the development of phobias in adults with
learning disabilities. Deinstitutionalization has been
suggested (Lindsay et al. 188; Matson 181;
McNally & Ascher 18;), as has an increased fre-
quency of negative life events in people with ID with
a resultant increase in avoidant behaviour (Hurley &
Sovner 18z). Little has been written on the diagnosis
of specic phobias in adults with ID or with difcul-
ties in the diagnostic criteria developed for the general
population in this group, most of the literature being
case reports or short series. However, Jackson (18)
in his review of treatment of phobias in people with
ID does summarize assessments used prior to and
during treatments. He suggests that measures should
be taken in motor-behavioural responses, cognitive-
verbal responses and physiological responses. Most
commonly used for the former is direct observation,
or the Behaviour Approach Test, in which subjects are
given instructions to approach the feared stimulus
progressively and measures are taken as to how suc-
cessful they are. Although he comments on how stan-
dardized attitude measures such as the Fear Survey
Schedules (Wolpe & Lang 16() are useful and
appropriate in people with ID, he does not address
the difculties of assessing cognitive responses in peo-
ple with more severe ID. He suggests the use of
electrodermal and cardiac rate measurements for the
assessment of physiological responses. He comments
on the usefulness of the clinical interview with infor-
mants and notes that case reports and studies rarely
use all such desirable measures.
There have been a number of case reports of spe-
cic phobias in adults with learning disabilities.
Although aspects of diagnosis are rarely discussed, all
have in common the need for in vivo contact desen-
sitization as an element in the treatment of these
phobias. Dog phobia has been described by Jackson
& Hooper (181), Lindsay et al. (188), Erfanian &
Miltenberger (1o) and Freeman (1;). Mansdorf
(1;6) and Perry (1o) describe cases who had pho-
bias of travelling in cars, the latter in a woman with
severe ID who was non-verbal and in whom the diag-
nosis was made by observing distress and autonomic
features of anxiety, such as hyperventilation, restless-
ness, pallor and vomiting. Cases of phobia of heights
(acrophobia) have been treated with contact desensi-
tization (Spencer & Conrad 18; Guralnick 1;).
The latter case was unusual in that imaginal desen-
sitization was also used, together with positive rein-
forcement. Waranch et al. (181) described a phobia
to mannequins, treated successfully by contact
desensitization followed by in vivo exposure in a
shopping mall. As with agoraphobia, DC-LD has
adapted ICD-1o diagnostic criteria to include readily
observable features of anxiety and has replaced
conceptually complex phenomena with additional
observable features of anxiety. In none of the diag-
nostic criteria for phobias in DC-LD is the individual
expected to be able to recognize that the fear is unrea-
sonable and excessive, as in ICD-1o, because this
requires a level of intellectual functioning and com-
munication which would preclude the diagnosis in
individuals with more severe leaning disabilities.
Instead, other psychiatric disorders as causes for the
fears must be excluded.
Panic disorder
Only two case reports could be found that mention
panic disorder directly. Malloy et al. (18) describe
a case of a person with mild ID whose symptoms of
panic disorder were missed by clinicians until a struc-
tured questionnaire was administered which was
adapted from the Structured Clinical Interview for
DSM-III-R (SCID) (Spitzer et al. 1o). The authors
make the point that the patient was unable to com-
municate the level of her somatic symptoms. More
reliance on behavioural observation as recommended
by DC-LD would probably been helpful in making
the diagnosis sooner.
Khreim & Mikkelsen (1;) reported on the case
of a person with mild ID and panic disorder who
responded well to sertraline, clonazepam and cogni-
tive therapy. They make the point that the internal
subjective experience (panic sensations and feelings)
can be difcult to perceive and puzzling to people
with learning disabilities. DC-LD has addressed this
by removing the more complex conceptual phenom-
ena such as depersonalization/derealization that are
included in the list of symptoms in ICD-1o and
56
replacing them by increased irritability and increased
restlessness.
GAD
The only information about clearly diagnosed GAD
comes from case reports. Ratey et al. (18) describe
a series of eight people with a diagnosis of GAD and
ID, all of whom appeared to respond to buspirone at
doses between 1 and ( mg per day. Unfortunately
the group all had multiple psychiatric diagnoses apart
from GAD. These included alcohol, panic, autism,
organic brain syndrome, depression and bipolar dis-
order. Ratey et al. (11) reported on six people who
were stated to have an ID. Four people were diag-
nosed as having GAD and two people with organic
anxiety disorder (OAD). All the individuals with
GAD showed reduced anxiety ratings following
treatment with buspirone. One person with OAD
responded to buspirone. The authors postulated that
in brains with low levels of -HT activity, low levels
of buspirone may act as a -HT agonist. Ellison
(1;) reports one case of a person with severe ID
and a diagnosis of GAD panic disorder and agora-
phobia who appeared well controlled on imipramine
and alprazolam, but improved when buspirone was
added and also beneted from desensitization and
compliance training.
Khreim & Mikkelsen (1;) describe one case of
a person with moderate ID and GAD who responded
well to buspirone and cognitive therapy. As with other
anxiety disorders DC-LD simplies some of the more
complex conceptual items, making diagnosis easier.
Khreim & Mikkelsen (1;) make the point that the
excessive and uncontrollable worry of GAD may have
a different presentation in people with ID similar to
children matched for their developmental age.
OCD
OCD is said to have a prevalence of .% in an
institutionalized population of adults with ID
(Vitiello et al. 18). There are frequent references in
the literature to the difculties in diagnosing this
condition in people with ID, due to dependence of
criteria in used in the general population on the pres-
ence of obsessions (Bodsh et al. 1a; Khreim &
Mikkelsen 1;) which people with ID nd difcult
to describe, due to their level of cognitive functioning
and difculties in communication (Bodsh & Madi-
son 1). However, it is widely noted that compul-
sions are a readily observable phenomenon in people
with ID and therefore the observation of their pres-
ence by others should allow the diagnosis to be made
(Vitiello et al. 18; Bodsh & Madison 1; Bodsh
et al. 1a; Barak et al. 1; Khreim & Mikkelsen
1;). The reliance on the cognitively complex con-
cepts of egodystonicity (recognition of the excessive
or unreasonable nature of the thought or motor act)
for the diagnosis of OCD in general population cri-
teria have also been commented upon (Barak et al.
1; Middleton & Cooper 1;; McNally &
Calamari 18). Similarly, the cognitive phenomenon
of resistance (attempts to suppress, ignore or neutral-
ize the thought or motor act) has been described as
being difcult to elicit, whether due to its complex
nature or difculties in communication experienced
by adults with ID (Vitiello et al. 18; Bodsh et al.
1a; McNally & Calamari 18). However, the
presence of observable signs of mounting anxiety or
tension (often manifesting as aggression to self, oth-
ers or property) when compulsions are interrupted or
prevented is often evident in adults with ID (Vitiello
et al. 18; Gedye 1z; Khreim & Mikkelsen 1;;
Middleton & Cooper 1;). King (1) puts for-
ward a hypothesis that some self-injurious behaviour
seen in people with severe and profound ID may be
compulsive in nature.
In view of the difculties with the International
Classication of Diseases [ICD] (World Health
Organization 1z) or Diagnostic and Statistical
Manual of Mental Disorders [DSM] (American Psy-
chiatric Association 1() some authors have stated
that general population criteria have been met, but
with riders such as with emphasis placed on behav-
ioral and observable features of the disorder rather
than psychic components (Prasher & Day 1) or
emphasis placed on the objective, observable behav-
ior and practical daily consequences, rather than
inner conict and anxiety (Vitiello et al. 18).
Gedye (1z) modied the DSM-III-R (American
Psychiatric Association 18;) criteria for the diagno-
sis of OCD by stating that recognition of the behav-
iour as excessive or unreasonable may not be true for
young children or those with mental ages of young
children and by stating the compulsive behaviour
designed to . . . prevent discomfort or seems to pro-
vide temporary comfort . . . or it is clearly excessive
(modications in quote marks). Gedye (1z) com-
57
ments that rating scales developed for use in the
general population are inappropriate for people with
learning disabilities. She developed a compulsive
behaviour checklist of z types of compulsions
grouped into ve categories: ordering, completeness/
incompleteness, cleaning up/tidiness, checking/
touching and deviant grooming. The checklist also
includes four items relating to interference with daily
living and four items relating to interruption of com-
pulsions by others on a four-point scale. The checklist
was studied in 1 adults who were known to meet
modied DSM-III-R criteria for OCD, but this study
did not include any measure of reliability. It was
studied subsequently in a proportion of subjects in a
study investigating the phenomenological difference
between compulsions and stereotypies (Bodsh et al.
1a) and shown to have over 8o% occurrence
agreements on inter-rater, testretest and validity
measures. Similarly, Bodsh & Madison (1)
developed the following criteria in their open treat-
ment trial of uoxetine for what they termed com-
pulsive behaviour disorder (rather than OCD): (a)
observed to engage in one or more compulsive behav-
iours (e.g. ordering, hoarding, touching, checking,
cleaning, arranging); (b) had a compulsion that staff
members reported interfered to some extent with
training and socialization efforts; and (c) were resis-
tant to change/novelty. It would appear from the
description in the text that there were no exclusion
clauses such as the symptoms not being better
accounted for by depressive episode or autism. Of the
1o adults fullling their diagnostic criteria included
in the trial all had self-injurious behaviour or aggres-
sion as their prime target behaviours, and all but two
had additional stereotypies. Barak et al. (1) in an
open trial of clomipramine in 11 adults with ID, mod-
ied DSM-IV (American Psychiatric Association
1() criteria by waiving the cognitive component of
the description of compulsions and using the specier
of poor insight from DSM-IV, as the subjects did not
recognize their compulsions as being excessive.
Clearly, the situation where different researchers are
adapting existing criteria or creating new criteria in
different ways is far from ideal, as difculties arise in
making comparisons between different studies. DC-
LD attempts to remedy this by taking the above
points into consideration. It does not require a sub-
jective description of the thoughts/acts originating in
the mind of the individual, but rather that there is no
evidence of the individual believing them to be
imposed from an external source. Neither is the indi-
vidual expected to be able to recognize that the
thoughts/acts are unreasonable, but that they are con-
sidered to be repetitive and excessive to observers if
not to the individual himself. There is no requirement
that resistance to the thoughts/acts is described. An
observable feature is added to the DC-LD criteria
which does not appear in ICD-1o, i.e. distress occurs
if attempts are made to prevent the individual from
carrying out the compulsion.
Other difculties in detecting and diagnosing OCD
in adults with ID have been raised in the literature.
First, difculties in distinguishing compulsions from
stereotypies and tics and secondly, differentiating
OCD from autism in this population have been
described. According to DSM-IV (American Psychi-
atric Association 1() stereotypies are repetitive,
seemingly driven and non-functional motor behav-
iours. They are common in people with ID, particu-
larly in the severe and profound range of disabilities,
and are also seen in autism. There have been several
studies in the United States investigating the differ-
ences between these phenomena in people with ID.
Vitiello et al. (18) studied all z8 patients with mild
to profound ID at a residential facility. Ten were found
to have compulsions based on DSM-III-R (American
Psychiatric Association 18;) and these were com-
pared with two control groups, one with repetitive
non-compulsive behaviour which scored highly on a
standardized scale of stereotypy and one which scored
low on the same scale. Two independent psychiatrists
unfamiliar with the patients rated repetitive behaviour
as either compulsion, stereotypy or neither. Inter-
rater reliability of the differential classication of com-
pulsions vs. stereotypies vs. neither were good (k =
o.8z), indicating that the psychiatrists were able to
distinguish reliably between these phenomena. Bod-
sh et al. (1a) carried out an observational study
of z1o adults with severe to profound ID living in a
state residential facility. They used the Compulsive
Behaviour Checklist (Gedye 1z), and symptom
checklists for stereotypy and self injurious behaviour.
There was found to be good inter-rater reliability,
testretest reliability and validity on these measures
(mean percentage occurrence agreements of over
8o%). Forty per cent of the subjects were identied
as displaying compulsions (although this is not equiv-
alent to the diagnosis of OCD as information on
58
severity, frequency and interference on functioning
was not collected), 6o.% stereotypy and (6.6% self-
injury. They found that comorbidity of compulsions
with stereotypies and self-injury was common. They
conclude that although all three symptom categories
are repetitive, they involved topographically distinct
motor movements. Moreover, the majority of subjects
manifested more than one movement within a partic-
ular category.
In another study carried out by Bodsh et al.
(1b), it is suggested that there is further indirect
neurochemical difference between stereotypies and
compulsions. In this study, spontaneous blink rate
was recorded as a measure of central dopamine func-
tion and compared across three groups: 1o subjects
with body-rocking stereotypy, 1o with compulsions
and 1o with neither stereotypies or compulsions. The
stereotypy group had a signicantly lower blink rate
compared with the control group, whereas no signif-
icant difference was found between the compulsive
group and the control group.
There has been little experimental work on distin-
guishing tics from compulsions in people with ID. A
tic is an involuntary sudden rapid recurrent non-
rhythmic stereotyped motor movement or vocaliza-
tion (ICD-1o). Such difculties in distinguishing
these phenomena were raised by Nelson & Pribor
(1) in their case description of a calendar savant
with autism and Tourettes syndrome. King (1)
also raises the issue, stating that it is difcult to oper-
ationalize measures of compulsivity in a non-verbal
population and gives the example that the behaviour-
hopping could be either a simple compulsion or a
complex tic. Given the reported comorbidity of
obsessive compulsive symptoms in Tourettes syn-
drome (Eapen et al. 1), these difculties may not
be easy to resolve, particularly in the ID population.
Differentiating between autism and OCD in people
with autism is seen by some as being difcult.
Fitzgerald (1), in a review article on the differen-
tial diagnosis of adolescent and adult pervasive devel-
opmental/autism spectrum disorders in general,
rather than in the ID population, suggests that autism
may be confused with OCD because of the restricted
interests, rigidity and desire for the preservation of
sameness seen in autism. Bodsh & Madison (1),
in their open treatment trial of uoxetine in adults
with ID and what they term compulsive behaviour
disorder, include resistance to change/novelty as one
of their criteria for OCD and comment that although
these criteria overlap with those of autism, the diag-
nosis of autism is too nebulous to reliably guide drug
treatment decisions, implying that their subjects may
comprise a subgroup of people with autism. Cook et
al. (1z) ask whether the rituals displayed by autistic
and other people with ID should be viewed as intrin-
sic to their disorders, as secondary adaptations or as
evidence for coexisting OCD. Of course, restricted,
repetitive and stereotyped patterns of behaviour,
interests and activities (ICD-1o) (World Health
Organization 1z) are only one of the three core
features necessary for the diagnosis of autism, a point
emphasized by Middleton & Cooper (1;). In addi-
tion, qualitative abnormalities in reciprocal social
interaction and qualitative abnormalities in commu-
nication are required. They suggest that OCD is
under-diagnosed in adults with learning disabilities
due to the inappropriate use of the term autistic
traits to refer to a person with obsessions or compul-
sions but no other autistic symptom. They comment
that the use of such a term would not be considered
in a person of average intelligence in the absence of
the other features of autism. Differences in the phe-
nomenology of obsession/compulsions between
OCD and autism have also been reported. McDougle
et al. (1) compared o adults with autistic disorder
seen at a pervasive developmental disorder clinic with
o adults with OCD seen at an OCD clinic matched
for age and sex in a casecontrol study. The mean IQ
of the autistic group was 6. and ;o% were said to
meet DSM-IV (American Psychiatric Association
1() criteria for mental retardation, although it
would seem there was a bias toward the mild ID/
borderline intellectual functioning to account for this.
In comparison, although IQ was not measured in the
OCD group, none was said to have mental retarda-
tion or borderline intellectual functioning. Using
direct discrimination function analysis, they showed
that autistic patients were signicantly less likely to
experience thoughts with aggressive, contamination,
sexual religious, symmetry and somatic content than
patients with OCD. Repetitive ordering, hoarding,
telling or asking, touching, tapping or rubbing and
self-damaging behaviour occurred signicantly more
frequently in the autistic group, whereas cleaning,
checking and counting behaviour was less common
in the autistic group compared with the OCD group.
They concluded that the types of repetitive thoughts
59
are signicantly different between autism and OCD.
However, as the two groups were not matched for IQ
it is not possible to say whether the difference is due
to differences in intellectual disability or related to
the presence of autism per se. This study requires
repeating using IQ-matched controls to determine
this.
It is possible, however, to draw some conclusions
on the content of compulsions from the studies
described above by investigating stereotypies and
compulsions in people ID (Vitiello et al. 18; Bod-
sh et al. 1a). Ordering has been found to be most
common compulsion in both these studies and order-
ing and tidiness was also found to be the most fre-
quent compulsion in a sample of adults with OCD
and Downs syndrome (Prasher & Day 1). In the
paper by Bodsh et al. (1a), ordering was followed
in order of frequency by cleaning, checking/touching,
completeness and grooming. However, Prasher &
Day (1) comment that hand-washing, checking
and cleaning were rarely seen and Vitiello et al. (18)
found no one in their sample with hand-washing,
despite this being the most common compulsion in
the general population. It would appear, therefore,
that there is probably a difference in the content of
compulsions in adults with ID compared with adults
of average intelligence.
Conclusions
It is possible to conclude from this review that anxiety
disorders do exist in adults with ID and a wide range
of such disorders have been described in the litera-
ture. There has been widespread comment on the
difculties of using diagnostic criteria developed for
the general population with adults with ID. It is dif-
cult to form any rm conclusions as to the preva-
lence of specic anxiety disorders, although this
relates in part to the lack of appropriate diagnostic
criteria for use in this population, and therefore the
lack of consistency in diagnosis between studies.
While data concerning occurrence of symptoms are
common, studies that look at clear diagnostic catego-
ries are much more rare. Anxiety is a normal phe-
nomenon and indeed is an adaptive response to the
many threats we face through our lives. There can
therefore sometimes be difculties in deciding what
is pathological anxiety in any given person. This dif-
culty is compounded in adults with ID who may
have limited abilities to describe complex internal
states and in whom there is often some reliance on
the report of others. The experience of life of people
with ID may be very different from that of those
people who care for them, and hence drawing con-
clusions as to what is pathological or adaptive can
pose a dilemma. This is complicated further when
concepts such as developmental appropriateness are
taken in to consideration. From the studies reviewed
it would appear that, unsurprisingly, fears of adults
with ID are similar to those reported by children of
equivalent developmental age. Should such fears
therefore be considered normal rather than diag-
nosed as an additional phobia? Clearly, in any indi-
vidual case, there has to be an assessment of the both
the content and the severity of the symptoms and
signs, as would occur in children of average intelli-
gence, before this decision can be made. An assess-
ment of the impact on social functioning would play
a key role in this.
It has long been shown that additional psychiatric
disorders tend to be overlooked in people with ID,
and some of the literature on diagnostic overshadow-
ing which refers to anxiety disorders has been
reviewed here. The under-recognition and hence
under-treatment of anxiety disorders in adults with
ID results in unnecessary suffering for the individual
concerned and also hampers the development of an
accurate research basis on which the treatment of
such disorders can be studied effectively. It is hoped
that the publication of DC-LD (Royal College of
Psychiatrists zoo1) as a diagnostic system, based on
a consensus of current clinical practice and opinion
in the United Kingdom and Republic of Ireland, will
assist in diagnosis of anxiety disorders both in clinical
situations and in research settings.
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