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ASSESSMENT

Overview of learning
disability in children

History
This group was originally the remit of learning disability psychia
try at a time when it had a much wider role which included, for
example, physical and genetic investigation. About 15 years ago
it was proposed that all children, irrespective of ability, should
be dealt with by child psychiatry; a move consistent with other
policies such as Children First and Inclusion, although, lacking
resources, this aspiration has remained unfulfilled. However,
many learning disability psychiatrists restricted themselves to
adult practice and it was left to community paediatrics to fill
the gap. Recently, there has been a resurgence of interest in this
group, with the establishment of specialist posts and the develop
ment of a professional network that meets regularly and encour
ages informal contact.

Tom Berney

Abstract
The child/adolescent is set in a complex framework of relationships and
services for the psychiatrist to work with. The medical disorders that
accompany learning disability, as well as the disability itself, complicate
the psychopathology so that the risk of misdiagnosis increases with the
degree of disability. To be effective the psychiatrist has to work well with
other disciplines and agencies, being open to their perspectives, as well
as being familiar with the subculture and dynamics of disability. The
work requires expertise in a variety of neurodevelopmental conditions,
particularly autism and epilepsy, as well as in psychopharmacology.

The setting
Children with learning disabilities and their families
The child and his family are at the centre of a complex of ser
vices and professionals which has the potential to become so
extensive as to lose them in the gaps (learning disabilities and
other developmental disorders affect males more frequently than
females, therefore he and his are used throughout this contri
bution). For these children and their families, diagnosis is not
just some academic exercise or even a working hypothesis but a
passport to a different life, determining the way they see them
selves, the solutions they select and the kind of service they get.
Diagnosis comes at different times depending on the basis
of the disability. For example, while the childs physical charac
teristics can lead to Down syndrome being recognized at birth
or the genetic history may be a prenatal pointer to Fragile-X, it
may need the childs introduction to nursery or even to school to
highlight the symptoms of autism. The parents then face a process
of adjustment that has parallels with the process of bereavement
but with the essential difference that, rather than adjusting to a
single event, they find themselves in a drawn-out process.In this
they develop a progressively better-defined appreciation of the
nature and degree of their childs disability as he moves through
his developmental stages, each point a potential crisis for them
to deal with. One example is the start of education, when the
child has to cope with and be compared against other children.
Another is puberty, which brings with it not only the immedi
ate issues around sexual expression but is also a reminder of
the childs potential (or not) to have children of his own.3 The
process is spread over years and many families benefit from the
support provided by the community learning disability teams.
Services need to be flexible, adapting to the wide diversity of
ethnic and cultural backgrounds in which families are rooted.
Families also require practical help as they bring up a child
whose responses may make their job far from intuitive. For exam
ple, a recurrent theme is the family whose feelings (whether of
empathy, pity, guilt or protectiveness) have led them to give their
child whatever he wants. As he grows up and becomes physi
cally stronger, he becomes a tyrant used to having his wishes
granted (if only for the sake of parental peace), uncertain where
the limits are and, not only enforcing his demands with disrup
tive or even violent behaviour but also continually testing to
find out at what point rules will be imposed. All this in a child
whose emotional needs may be no different from others at the

Keywords adolescent; child; disability; disturbance; learning disability;


mental retardation

The population
Disability can take many forms, selectively affecting various
functions such as cognition, language or emotional development;
its nature and degree the result of infinite permutation. It takes
the child and family into its own network of relationships and
care, amounting to a subculture, which the psychiatrist has to
understand both to make sense of their problems as well as to
enlist its help in their management. The focus is not simply about
working with individuals and their families but is also about the
development and use of services that will prevent as well as treat
the problems that go with disability.1
This complex system can involve a large variety of disciplines
and agencies, targeting populations that, although overlapping,
are not identical. For example, while legislation pivots around
the age of 18 as the time of transition to adulthood, various ser
vices stop short of this. Similarly, although learning disability is
defined by an intellectual ability more than two standard devia
tions below the norm (i.e. an IQ of less than 70), services vary in
their chosen remit with some excluding mild learning disability.
All this is blurred by the needs of people, such as those with
autism spectrum disorder (ASD), whose functional ability may
fall far short of their intellectual potential.2

Tom Berney FRCPsych FRCPCH is a Consultant in Developmental


Psychiatry who has developed a specialist service based at Prudhoe,
Northumberland, UK, which includes both inpatient and community
services. He chaired the working parties that produced the policy
statement Psychiatric Services for Children and Adolescents with
Learning Disabilities (Royal College of Psychiatrists, 2004).

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ASSESSMENT

same developmental stage but who, less able to learn from his
peer group and environment, requires more formal teaching and
support.
On the other hand, for many families such difficulties are off
set by a great sense of achievement in the extent to which their
children overcome their disability, enjoy their childhood and
grow up with good self-esteem to make their own contribution
to society.

Terms used to categorize disability

The community team for learning disability


Once disability is identified, the process of assessment and
early management is the province of the paediatrician and the
Child Development Team. The Community Team for Learning
Disability then takes over in conjunction with education and
social services. Until now, the demands of disability have over
ridden any considerations of age, encouraging the development
of teams working across the whole lifespan. The recent empha
sis on childrens services (exemplified by the Childrens Trust)
has encouraged the development of separate teams for young
people. Composed primarily of nurses, they should also include
other disciplines, notably psychiatry, psychology, occupational
therapy, and speech and language therapy. These teams can take
a double role:
to provide the supportive service that helps a child and his
family adjust to disability as well as offsetting its accompany
ing difficulties; they may provide a range of additional help
such as teaching communication or feeding skills, or helping
the parents to prepare and implement a training programme
to assess and treat psychiatric disturbance, the psychiatrist
being an essential component.

Health

Education

learning disabilities

learning difficulties

6950
4935
3420
< 20

Mild
Moderate
Severe
Profound

Moderate
Severe

*Source: World Health Organization, 1992.4

Table 1

are smaller and the relationship between teacher and pupil is


more intimate, which means that the staff can be a rich source
of information both about the children and about how they
relate to their families. Education is based on relationships and
behavioural training so it is a natural step for staff to be closely
involved in the development and implementation of treatment
programmes, making the school-based psychiatric service partic
ularly effective. However, multi-agency work can threaten confi
dentiality so this is subject to the familys agreement.5
Most children live at home but they may move into an outof-home placement for an assortment of reasons for example,
parents who, hampered by neighbours, other children, marital
disharmony or simple sleep deprivation, may be unable to con
tain the child, let alone provide the necessary level of consistency
and supervision. Fostering and adoption have largely taken the
place of the childrens home but, while residential schooling was
intended for children who lived too far away to attend daily, it
can be a more acceptable alternative to local authority care. In
some cases accommodation may extend beyond the normal term
and a child may return home only for 2 to 4 weeks, usually over
the Christmas holiday, or even not at all.
Transitions are a big hurdle for the child and their family,
particularly as the time comes to leave school or college, and
there may be specific agencies (such as Connexions in England)
to help them with these difficulties.

Educational services
From the start, the child, less able to learn for himself, will
need formal teaching and pre-school programmes which work
intensively with both parents and child (such as Hanen, Por
tage and Sure Start). While these can produce substantial shortterm improvements in the childs attainments and adjustment,
more sustained change is likely to need further intervention (e.g.
through booster programmes).
The child then moves into the educational system and its
assortment of provision. The policy of inclusion encourages his
needs to be met within the mainstream school but the addition
of psychiatric disturbance often tips the balance towards a spe
cial school. These schools, smaller and with more structure and
supervision, may be divided by age (into primary and secondary)
or by ability; the labelling of the latter causing confusion. In the
UK, the adoption of the term learning disabilities by the Depart
ment of Health was confusingly similar to the term learning dif
ficulties used in Education the distinction is an important one
as the two systems attach different meanings to mild and mod
erate4 (Table 1) confusion that is compounded by the tendency
to use disabilities and difficulties interchangeably. Schools may
also specialize in particular forms of disability including autism,
epilepsy, cerebral palsy and visual or auditory impairment. The
more specialist the school, the more likely it is that children will
be disturbed and also that they will not be local.
Depending on the nature and degree of disability, the child
may need to be taught a wide variety of skills in areas as diverse
as self-help, language and social and sexual relationships. Classes

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IQ*

Psychiatric disturbance
How prevalent is psychiatric disturbance?
Disturbance is more common than in the general population and is
more prevalent the greater the degree of disability. The actual figures
depend on the definition of disturbance so that rates such as 40%
tend to include autism as one of the diagnoses, whether or not there
are any additional problems. Even allowing for this, the rates of anxi
ety, conduct and neuropsychiatric disorder are much higher than in
the normal population.6,7 About 10% of the population with learning
disability will have challenging behaviour, a statistic that tends to
hide the nature and destructive intensity of the disturbance.8
What form does it take?
Young people with a learning disability have the full range of
psychiatric disorders but this is coloured by the disability so
that, where communication is impaired, it is difficult to iden
tify a disorder if the diagnosis relies predominantly on subjective
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ASSESSMENT

Epilepsy is frequent, the more so the greater the degree of


learning disability. It Is also associated with ASD, and the exact
relationship between these three disorders is uncertain. It is to
be expected that up to 30% of children with ASD will develop
epilepsy at some point and that, of these, half will have their
onset in childhood and the other half in late adolescence or early
adulthood the likelihood of epilepsy probably falls to 510%
for those in the normal range of ability. The combination of poor
communication and unusual behaviour mean that seizures may
be masked or mimicked, epilepsy passing unrecognized or, alter
nately, being over-diagnosed.
Attention deficit hyperactivity disorder (ADHD) not only is
more frequent but probably also less responsive to stimulants.
In part this may be the consequence of over-diagnosis, the clini
cian failing to appreciate the degree of disability or communica
tion problems that hinder the childs engagement in a task. It
may also be the result of the misdiagnosis of a condition that
arises from a complex of the underlying medical disorder, poorly
controlled epilepsy and anxiety. Occasionally the overactive,
slim child will turn into an underactive, obese adolescent whose
attention deficit, if it persists, may be difficult to recognize.
The intimate dependency of the young person coupled with a
limited ability to communicate leaves them vulnerable to abuse.
Much abnormal behaviour may be acting out a form of com
munication by someone who has not learnt how to put their
distress into words or signs. Often interpreted as aggressive, this
behaviour may be directed towards property or people, whether
the self or others. Often dismissed as simply ill temper, it war
rants looking at its function.
Development is not an even process but takes the form of
spurts followed by periods of consolidation. A common traject
ory for disorders such as autism and epilepsy is to improve with
age, particularly in late childhood and late adolescence, but often
with a pubertal exacerbation. The pattern is frequently compli
cated by a cyclical undertone, with the child going through good
and bad spells; a natural fluctuation needs to be borne in mind
in evaluating any treatment.

s ymptoms. Depression may be recognized from changes in the


childs demeanour, activity, appetite and sleep, but it may be
impossible to diagnose schizophrenia. While epilepsy is fre
quent, sensory seizures may be inferred only from a persons
behavioural response, opening the way to misdiagnosis.
Learning disability predisposes the child to certain disorders
(Table 2).
Autism spectrum disorder occurs in 9% of those with mild
learning disability and 26% of those whose learning disability is
severe.9 It is particularly associated with certain medical disor
ders that cause disability but, even in Down syndrome, its preva
lence at 510% is much higher than in the normal population.
Its association with disturbance means that the psychiatrist will
encounter it much more often than these figures would suggest.

Causes of psychiatric disturbance in children


Having a disability
Low self-esteem can come from failing to achieve as much as
siblings or peers
Unrecognized disability the level of communication is
particularly open to be misunderstood: if the patient speaks
fluently it is assumed that their comprehension is equally
good and they are therefore expected to over-perform
A sense of being different from others (that can extend to
isolation)
Poor communication no one understands what the patient
is trying to tell them
The underlying medical disorder
The behavioural phenotype
Other developmental disorders, notably epilepsy, ADHD,
autism
Comorbid psychiatric disorder (e.g. depression and anxiety
states)
Disorders that represent a combination of habit and
abnormal underlying physiology (e.g. disorders of sleep,
eating and elimination)
Physical problems, notably atopic, dental, ENT and
gastrointestinal problems
The effects of medication used to treat some of the comorbid
disorders, particularly anti-epileptic drugs

Assessment (Table 3)
Childrens services are coming together to work in a more closely
coordinated fashion, with common referral pathways, easier
cross-referral and shared skills and resources. The aim is to reduce
repetitious assessment and delay for a child moving through the
different tiers, disciplines and agencies of a complex network of
services. Much of the initial data-gathering might be done by a
primary mental health worker, the psychiatrist and other (scarce)
professionals coming in later, taking their cue through a shared
referral meeting. If this includes people from other agencies, such
as the educational psychologist and social worker, it is important
that this is agreed with the family in establishing the contract of
confidentiality.10,5
The community bias, with team members regularly going into
schools and homes, encourages face-to-face discussion with refer
rers as well as information-gathering from the different areas of
the childs life. The extent of confidentiality should be clear and
feedback (including the copying of letters) agreed with the fam
ily. Work should be centred on the child and their family who,
as far as possible, should be seen in their preferred settingrather

The familys response to disability


Disappointment, inappropriate expectations, rejection
Inappropriate parenting
Marital disharmony this can have varied effects but might
include emotional stress, inconsistency and rejection
Life events that result from or are made worse by the disability
Institutionalization and socioeconomic deprivation
Bereavement
Physical, sexual or emotional abuse, including bullying and
scapegoating
Any form of life event where there is inadequate support,
particularly as the patient has to make a transition from one
setting to another
Table 2

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ASSESSMENT

DSM-IV. For many, this is the first step in planning their manage
ment but, as such, should be only one part of a broad, multidisci
plinary assessment that takes account of the following:
Level of cognitive ability identifying discrepancies between
verbal and performance abilities as well as the diversity of spe
cific disabilities that can accompany any neurodevelopmental
disorder. This requires instruments such as the Wechsler Intel
ligence Scale for Children (WISC).
Functional ability acknowledging the extent to which less
obvious problems can increase the degree of handicap. These
can be in a wide variety of areas, including social relationships,
communication (receptive and expressive), imagination and ex
ecutive function. Measured by instruments such as the Vineland
Adaptive Behaviour Scale, the effect of specific disabilities can
be to reduce an individuals ability to look after themselves, to
function independently or to cope with other people.
Other (comorbid) developmental disabilities notably autism,
attention deficit disorder, tics, sensory anomalies and dyspraxia,
as well as epilepsy.
Mental capacity the criteria and their underlying principles
are well established. While a minor does not have the legal com
petence to refuse treatment (including detention in hospital), if
they meet the capacity criteria to the extent that they are consid
ered sufficiently (Gillick) competent they may accept treatment
which does not require a parental proxy decision.11
Other elements such as the risk of coming to harm or of
offending.
The aim of this wider assessment is to provide a detailed plan
that will assist the child, through the appropriate teaching and
training and with the help of their family and professionals, to
lead as full and as normal a life as possible.

Assessment of psychiatric disturbance in children


Information from parents/carers
The presenting problems:
a description of the symptoms including their frequency,
severity, duration and development over time

why has the referral been made at this point of time?

who else has been involved and what are they doing?
The level of physical and mental ability
The childs personality, including activities, interests, social
relationships
The family structure and relationships and, in particular:
how siblings and other close relatives and friends are
responding

other problems faced by the family now and in the past

support or help they have received
Developmental history:
early developmental detail, particularly language
development and delayed milestones
the diagnosis and assessment of the learning disability,
including investigations carried out

information the family have obtained
the familys perception of the disability, now and in the
future

other disorders and their impact
a list of pre-school and school placements, including
progress and problems as well as the reason for leaving
Medical history, including past and present medication
Psychiatric history, including previous interventions
Interview with the child
A formal physical and mental state examination may not be
possible, particularly at the first interview
Much can be learned from watching the child in different
settings such as in the classroom, the playground and at home

Management
The first move is to treat anything that might be causing dis
comfort: a task that might range from making the environment
less complex through to treating an underlying physical problem
such as toothache, gastritis or epilepsy. Poor communication is
a frequent source of misunderstanding and frustration (Table 2).
It is essential to keep a sense of objectivity (and to listen to what
others think). Just as McCarthy saw communism behind all of
Americas ills, it is easy to ascribe disturbance to a particular
form of pathology and, on this basis, to embark on evermore
adventurous therapeutic trials.
Limited communication has led to an emphasis on behav
ioural and systemic approaches to treatment, although there
is a returning recognition of the part that the individual psy
chotherapies might play. Psychoactive medication has a bigger
role than in mainstream child psychiatry but is often overused.
Children may show a startling sensitivity or insensitivity to
medication and, such is the individual variation in absorption
and metabolism, that there is little to be gained by calculat
ing fractional dosages based on, for example, body weight or
age. Compliance is the major hurdle so that drugs should be
easy to dispense and may need to be masked by fizzy drinks
or favoured foods such as tomato sauce (i.e. off-label). A sub
stantial amount of prescribing is off-licence because it is often
not worth the manufacturers while to pursue a licence for this
small niche market.

Information from other professionals


Information from the school staff, school health service and
GP may cast light on family functioning as much as on the
childs behaviour and health
Information from the school psychological service and other
services, particularly the extent to which the nature and
cause of the childs disability have been ascertained
Investigations might include:
Psychometry
EEG
Speech and language assessment
Genetic assessment
Table 3

than a clinic; although this has to be balanced against the effi


cient use of time, the services hallmark should be flexibility.
Within this framework, diagnosis is only one part of the wider
process of multidisciplinary assessment that flows on to manage
ment. It comes down to the allocation of a number of descriptive
labels that summarize whether an individual meets the criteria
agreed by consensus and set out in such systems as ICD-10 and

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ASSESSMENT

Much of the psychiatrists work is indirect, being through oth


ers who are actively working with the child, whether parents,
residential care workers or teachers. A form of liaison psychia
try, the psychiatrist has to understand the cultures of the family
and those working with them; cultures that may reflect an ethnic
minority, a religious group or an institution (such as a residential
school or home), but all coloured by the culture of disability.12

behaviour of people with learning disabilities. Birmingham: British


Institute of Learning Disabilities, 1993.
9 de Bildt A, Sytema S, Ketelaars C, Kraijer D, Volkmar F, MinderaaR.
Measuring pervasive developmental disorders in children and
adolescents with mental retardation: a comparison of two screening
instruments used in a study of the total mentally retarded
population from a designated area. J Autism Dev Disord 2003; 33:
595605.
10 Department of Health. Confidentiality: NHS code of practice.
London: Department of Health, 2003.
11 British Medical Association. Consent, rights and choices in health
care for children and young people. London: BMA Books, 2000.
12 Royal College of Psychiatrists. Psychiatric services for children
and adolescents with learning disabilities CR123. London: Royal
College of Psychiatrists, 2004.

Conclusion
This psychiatry is multidisciplinary and multiagency, truly in the
community and set in a service that combines prevention with
treatment. It represents real developmental psychiatry, each case
bringing a satisfying mix of psychodynamic, behavioural and
biological factors.

References
1 Department of Health. New ways of working for psychiatrists:
enhancing effective, person-centred services through new ways of
working in multidisciplinary and multiagency contexts. London:
Department of Health, 2005.
2 OBrien G. Defining learning disability: what place does intelligence
testing have now? Dev Med Child Neurol 2001; 43: 5703.
3 Bicknell J. The psychopathology of handicap. Br J Med Psychol
1983; 56: 16778.
4 World Health Organization. The ICD-10 classification of mental
and behavioural disorders: clinical descriptions and diagnostic
guidelines (ICD-10). Geneva: World Health Organization, 1992.
5 Royal College of Psychiatrists. Good psychiatric practice:
confidentiality and information sharing CR133. London: Royal
College of Psychiatrists, 2006.
6 Emerson E. Prevalence of psychiatric disorders in children and
adolescents with and without intellectual disability. J Intellect
Disabil Res 2003; 47: 518.
7 Green H, McGinnity , Meltzer H, Ford T, Goodman R. Mental health
of children and young people in Great Britain, 2004. London:
Department of Health, 2005.
8 Kiernan C, Qureshi H. Challenging behaviour. In: Kiernan C, ed.
Research to practice? Implications of research on the challenging

PSYCHIATRY 5:10

Useful contact
Those who wish to know more about the professional
network of psychiatrists with a special interest in children and
adolescents with a learning disability should contact Dr. Chris
Speller: chris.speller@kennetandnwilts-pct.nhs.uk

Practice points
Psychiatry is only one component of the services that are
required for a child with learning disability, their wider remit
including family support and the prevention of disorder
The psychiatrist has to work with and through other
disciplines and agencies: good relationships are essential to
the welfare of the patient
Besides making it easy to miss a diagnosis, the complex mix
of factors encourages overdiagnosis: the psychiatrist should
be open to the views of colleagues

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2006 Elsevier Ltd. All rights reserved.

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