CLASSIFICATION
AND ASSESSMENT OF PSYCHIATRIC DISORDERS IN ADULTS WITH LEARNING
[INTELLECTUAL] DISABILITIES
Sally-Ann Cooper
There are several types of classifications and assessments that
may be useful when working with people with intellectual disabilities.
These may address the following areas:
- the level of a person's ability
- a person's skills, functioning and community participation
- the cause of a person's intellectual disabilities
- epilepsy
- the range of mental disorders experienced by people with intellectual
disabilities.
Mental disorders are commonly experienced by people with intellectual
disabilities - the point prevalence has been measured as 40% (Cooper
and Bailey, 2001). A person with intellectual disabilities is
therefore considerably more likely to have an additional mental
disorder than the average person from the general population.
This is not surprising when one considers the likely causes of
mental disorders. As well as having all the risk factors that
are relevant for the whole population, people with intellectual
disabilities may have extra risk factors. These can be considered
using a biological-psychological-social-developmental framework
(see
Figure 1: Possible risk factors for mental disorders).

Assessment
The integration and interpretation of information collected during
a thorough psychiatric assessment typically comprises three stages:
- measurement of psychopathology
- classification of psychopathology into diagnostic groups
- determining the likely aetiology.
Methods - the methods of assessment used with the general
population are also relevant when working with people with intellectual
disabilities, supplemented by some additional special considerations.
This includes spending time with the person to hear their concerns
and experiences and to conduct an examination; taking a collateral
history from a close relative or other close person; reviewing
previous medical case notes; and speaking to professionals from
other disciplines, such as community nurses, psychologists and
social workers, who are involved in supporting the person. The
information gathered should cover the usual psychiatric headings
of full history, mental state examination, physical examination
and special investigations. The findings can then be integrated
and interpreted into the three-stage framework to summarize the
relevant psychopathology (positive and negative findings), classify
and describe likely aetiology. It is important to conduct a thorough,
detailed assessment so that the treatment/intervention/support
plan can be devised in such a way as to optimize the chance of
best possible outcome for each individual in his or her particular
set of circumstances.
Special assessment considerations
Psychiatric assessment of a person with intellectual disabilities
has much in common with assessments undertaken with people of
average ability, but there are a number of additional special
considerations (see
Figure 2: Psychiatric assessment of a person with an intellectual
disability).
Capacity to consent: a person's intellectual disabilities
and/or additional mental disorder may influence his or her capacity
to consent to an intervention. Assessment should therefore include:
- the person's understanding of a proposed intervention and
what it involves
- the reason for the proposed intervention
- the potential benefits of the intervention
- the potential risks of the intervention
- the potential consequences of declining the intervention
- the range of alternative interventions, including their potential
benefits and risks.
A person may have capacity to consent to or refuse some interventions
(e.g. a blood test to screen for hypothyroidism) but not have
capacity to consent to or refuse more complex interventions (e.g.
cardiac surgery or electroconvulsive therapy). When a person does
not have capacity to consent to a particular intervention, it
is good practice to offer as much information and explanation
as possible in as accessible a format as possible, to enable the
person to partially consent/decline as far as they have capacity
to do so. It is then important to include the person's next-of-kin,
advocate, legal representative/guardian, professionals from other
disciplines involved in the person's care and key support workers
in decision-making. The exact process will depend on the area
of jurisdiction; for example, in Scotland the legal framework
provided by the Adults With Incapacity (Scotland) Act 2000 should
be followed (see also Keywood and Flynn 2003: pp.59-62). In some
circumstances, implementation of mental health legislation may
be appropriate.

Communication: a number of factors can influence a person's
ability to understand and to express opinions and information.
The extent and type of a person's intellectual disabilities influences
communication ability and needs, as can a range of additional
factors, such as:
- neurological factors
- mental disorders
- drug side-effects
- life experiences that have shaped personality development
(e.g. leading to social phobias or lack of confidence)
- social circumstances
- the setting in which the communication is taking place
- the communication style of the other person(s)
It is important to consider all these factors in order to enhance
communication. (see
Figure 3: Communicating with a person with an intellectual disability).
Clinicians should remain aware of possible communication limitations;
even the most able person with intellectual disabilities may have
difficulties remembering and communicating the temporal sequence
of past events or symptoms. Acquiescence and suggestibility may
also remain a limitation to the assessment of information. It
should be remembered that a person with limited or no verbal communication
skills may use other methods of communicating their feelings.
This may include a change in their usual behaviour, or even aggression
if this is the only or easiest way to communicate pain, distress
or fear (see also Joyce 2003: pp.17-20).

Collateral history: taking a history from an informant
is an integral part of psychiatric assessment. Sometimes several
informants are necessary. The more severe the person's intellectual
disabilities, the greater the reliance on carers for information;
for people with profound intellectual disabilities and no verbal
communication skills, most of the assessment information will
be provided by carers.
Information from parents - parents are usually able to
provide detailed information from the past. This helps to provide
an understanding of how the person developed through their childhood,
the adverse experiences they encountered, their achievements and
relationships that shaped the person they have become as an adult.
This information is also important to distinguish the usual behaviour
and traits of the person from behaviours that are new (i.e. symptoms)
and may be part of mental ill-health. Important background information
may also include:
- past psychiatric or medical information
- past drug and other treatments, and their effectiveness
- allergies
- family history of psychiatric and medical problems
- details of the person's skills and abilities, against which
current function may be compared (regression of skills is often
a feature of mental ill-health, but its detection requires knowledge
of previous level of skills).
Information from others - if the person no longer lives
with their parents, the parents will not be able to provide detailed
information on daily aspects of life. The level of detail and
accuracy of information from support workers may depend on various
factors, such as:
- how much individual time the support worker spends with the
person and how well they know her/him
- how many other people the worker also supports
- how well information is shared between members of the support
teams
- how well organized care is (e.g. 'key-worker' system, identified
responsibilities)
- how well the employing organization supports and develops
its support workers.
If a person's support package has only recently been established,
the support workers may be able to provide limited information
only. Understandably, support workers may volunteer information
on needs that present the greatest challenge to care (e.g. aggression)
and omit symptoms such as social withdrawal or loss of energy.
It is important, therefore, that a thorough assessment is always
conducted of all possible psychopathology, using a semi-structured
approach, after the person and their support worker have given
the history in their own words.
Where necessary, additional potential informants, such as employers,
day centre officers or support workers from previous placements,
should be approached, and limitations and gaps in the gathered
information should be recognized.
Pathoplastic effect of developmental level on psychopathology:
psychopathology is modified by developmental level. This pathoplastic
effect is greater the more severe the person's intellectual disabilities.
Understanding of intellectually complex concepts such as guilt
requires a developmental age of about 7 years. An adult with profound
intellectual disabilities will learn throughout her/his life,
will develop skills, and will have adult biological drives and
motivations and therefore is not the same as a 0-3-year-old (the
equivalent mental age to profound intellectual disabilities),
but she/he will not acquire the mental capacity to understand
abstract concepts requiring a higher developmental age. Similarly,
psychopathology such as hopelessness, worthlessness, suicidal
ideation, delusional perception, and distorted body image do not
present at more severe levels of intellectual disabilities. Additionally,
some psychopathology (e.g. psychotic symptoms) requires good verbal
communication skills to describe its presence, hence it may not
be elicited in people with profound intellectual disabilities.
Some symptoms that occur during mental ill-health in adults with
intellectual disabilities are rare in adults of average ability.
Examples include loss of skills, impairment of communication,
and onset of or exacerbation of pre-existing problem behaviours.
Irritability is often the core mood symptom presenting in depressive
episodes. Developmental level can also have an impact on the content
of abnormal phenomena. For example, delusions may have a 'childlike'
content, reflecting the intellectual capacity and life experiences
of the person.
Suggestibility can influence the characteristics of psychopathology.
Regarding misery, for example, the assessor may be able to cheer
up the person to the point of smiling or laughing during the interview.
Characteristically, the person is unable to sustain the cheerful
mood state, and returns to misery when not being talked out of
it. Delusions may not be 'unshakeable' - i.e. the assessor may
be able to gain the person's acquiescence that they are not really
true; however, the person returns to the delusional belief once
not being actively persuaded otherwise.
Developmental history: assessment of development serves several
functions.
- Measurement of developmental level enables appropriate interpretation
of psychopathology (in the context of the pathoplastic effect
of intellectual disabilities on psychopathology).
- Determining the usual pattern of behaviours and skills for
the person is essential to distinguish symptoms of mental ill-health
from long-standing traits (e.g. sleep disturbance may be a long-standing
trait, or one of several symptoms of depressive episode, requiring
treatment).
- Diagnosis of autistic spectrum disorders (ASD) and attention
deficit hyperactivity disorder (ADHD) requires knowledge of
developmental history (in addition to present information) (see
also Howlin 2003; pp. 24-8).
- A good understanding of development reduces the likelihood
of 'diagnostic overshadowing' (the tendency to attribute all
problems to the person's intellectual disabilities - e.g. failing
to identify, and therefore treat, a person's superimposed depressive
episode or anxiety disorder). This is particularly relevant
for people who in addition to intellectual disabilities have
ASD or ADHD; depression and anxiety are thought to occur commonly
in people with ASD.
- For some individuals, developmental models may be relevant
in understanding the aetiology of problem behaviours: e.g. head-banging
is a developmental phase at about 18 months of age; oppositional
behaviour is common at about 2 years. For an adult with a similar
level of mental capacity, developmental models may help explain
aetiology, with behaviour development arrested at certain stages
such that it is a problem for the person.
- Plans of treatment/interventions/supports need to be devised
in a way that is developmentally appropriate.
- Determining the underlying cause of a person's intellectual
disabilities identifies genetic causes. An awareness of the
associated health factors allows for early detection and/or
prevention. For example, hypothyroidism is common in Down's
syndrome, as are sensory impairments and cardiac anomalies,
all of which can be screened for.
Behavioural phenotypes: many genetic causes of intellectual
disabilities have specific behavioural phenotypes. This area is
covered in O'Brien 2003: pp.33-38.
Epilepsy is common, occurring in about 25% of adults with
intellectual disabilities (see also Bernal 2003: pp.69-73). Compared
with epilepsy among the general population, people with intellectual
disabilities often have mixed seizure types and seizure frequency
that is difficult to control. This is of direct relevance to psychiatric
assessment, and often requires differential diagnosis between
seizures (particularly complex partial seizures), mental ill-health
(such as panic attacks, problem behaviours and depressive episodes)
and drug side-effects (e.g. side-effects of anti-epileptic drugs
can mimic depressive episodes or problem behaviours). As mental
disorders and epilepsy are both common in this population, they
often co-exist. People who have epilepsy may also have a higher
rate of mental disorders than those who do not. They may have
psychological sequelae of the epilepsy itself, and a proportion
additionally experience pseudo-seizures. Psychiatric assessment
should include an assessment of epilepsy in order to address these
issues, and therefore requires a knowledge of epilepsy, its associations
and treatments, in addition to its interface with psychiatric
disorders.

Assessment of epilepsy is also required to inform the development
of treatment plans in view of the effects of psychotropic drugs
on seizure threshold, and drug interactions between anti-epileptic
drugs and other psychotropic drugs.
Physical health: for many reasons, physical disabilities
and disorders are common in people with intellectual disabilities,
who are also more likely to be prescribed medication. There may
be psychiatric sequelae to some of these physical health needs,
and side-effects of drugs and drug combinations. Assessment of
physical health and drug histories therefore assumes a more important
component of psychiatric assessment than it might for a person
of average ability.
Classification
Classification of mental disorders is undertaken for a variety
of reasons. In the mid-20th century it was recognized that there
was considerable international variation in psychiatric practice,
and the introduction of operationalized diagnostic criteria focused
attention on improved, more standardized psychiatric assessments
and diagnostic procedures. It could be contended that while such
issues are no longer contemporary in general psychiatry, they
remain relevant for psychiatric practice with people with intellectual
disabilities. Classification can therefore improve clinical practice
and so benefit individuals. Classification systems also provide
a tool to use in the description of whole population needs and
in service planning. Classification also has an essential role
in research. Inclusion criteria must be clearly described in order
to:
- allow comparison of findings between different studies
- replicate studies
- evaluate effectiveness of treatment in one group compared
with another
- study the epidemiology of mental disorders in the population
- identify potentially modifiable vulnerability and protective
factors for mental disorders.
All of the above requires the use of operationalized diagnostic
criteria as described in a classificatory system.
The development of DC-LD
Classification of mental disorders among the general population
typically draws on the diagnostic criteria within ICD-10 or DSM-IV.
However, while these systems may be appropriate for people with
mild learning [intellectual] disabilities, they lack validity
and utility for people with more severe learning [intellectual]
disabilities or with ASD or ADHD in addition to mild learning
[intellectual] disabilities. DC-LD (Diagnostic Criteria for
Psychiatric Disorders for Use with Adults with Learning Disabilities;
Royal College of Psychiatrists, 2001) provides more appropriate
operationalized diagnostic criteria within a classification system
specifically designed for use with adults with learning [intellectual]
disabilities, and is complementary to ICD-10 (see
Figure 4: Diagnostic Criteria for Psychiatric Disorders for Use
with Adults with Learning [Intellectual] Disabilities [DC-LD]).
The development of DC-LD addressed the following issues:
- the pathoplastic effect of increasing severity of learning
[intellectual] disabilities on psychopathology
- limitations in eliciting psychopathology from informant histories
(and hence the increased likelihood of inaccuracy introduced
by the extensive sub-classifications within ICD-10 main categories)
- inconsistencies within ICD-10 and DSM-IV regarding classification
of problem behaviours, features that are recognized as part
of a behavioural phenotype, and use or otherwise of the 'organic'
categories
- the need to distinguish between features due to level of learning
[intellectual] disabilities, cause of learning [intellectual]
disabilities, developmental disorders, mental illness, personality
disorders and problem behaviours.
DC-LD introduces a hierarchical approach to improve clinical
practice and reduce the risks of diagnostic overshadowing. It
provides further information on assessment and classification
of mental disorders in adults with learning [intellectual] disabilities.
PRACTICE POINTS
- Mental disorders are common in people with learning
[intellectual] disabilities
- Psychiatric assessment should include all aspects of
the standard psychiatric assessment as used with the general
population plus additional considerations relevant
specifically to people with learning disabilities
- Classification of mental disorders requires an appropriate
system with valid diagnostic criteria: DC-LD has been
specifically designed for people with learning [intellectual]
disabilities, and can be used to complement ICD-10.
- Aetiology of mental disorders is best understood using
a biological-psychological-social-developmental framework.
The same framework is also useful when designing plans
of treatment/intervention/support
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REFERENCES
Bernal J, Epilepsy in People with Learning Disabilities. Psychiatry
2003; 2:9; 69-73.
Cooper S-A, Bailey N M. Psychiatric disorders amongst adults
with learning disabilities - prevalence and relationship to ability
level. Ir J Psychol Med 2001; 18: 45-53.
Howlin P, Autistic Spectrum Disorders. Psychiatry 2003; 2:8:
24-28.
Keywood K, Flynn M, Healthcare Decision-making by Adults with
Learning Disabilities: Some Levers to Changing Practice. Psychiatry
2003; 2:9: 59-62.
Joyce T, Functional Analysis and Challenging Behaviour. Psychiatry
2003; 2:8: 17-20.
O'Brien G, Behavioural Phenotypes in Adulthood. Psychiatry 2003;
2:8: 33-38.
FURTHER READING
Books Beyond Words series. London: Gaskell.
(A series of purpose-designed publications presenting pictorial
information to facilitate work with people with intellectual disabilities.
They cover a range of topics and are published by Gaskell.)
Royal College of Psychiatrists. DC-LD (Diagnostic Criteria for
Psychiatric Disorders for Use with Adults with Learning Disabilities/Mental
Retardation). London: Gaskell, 2001.
(A new classificatory system designed specifically for use with
adults with intellectual disabilities; it is complementary to
ICD-10. As well as presenting operationalized diagnostic criteria,
the text discusses issues relevant to psychiatric assessment with
this population.)
| This article was first published in Psychiatry; Volume
2:8, August 2003 and reprinted with the kind permission of the
Medicine Publishing Company. |
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