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INTELLECTUAL DISABILITY
OKUWOGA TEMITOPE
OUTLINE
• INTRODUCTION
• HISTORICAL BACKGROUND
• EPIDEMIOLOGY
• AETIOLOGY
• CLASSIFICATION AND CLINICAL FEATURES
• COMORBIDITIES AND BEHAVIOUR THAT CHALLENGES
• MANAGEMENT
• PREVENTION
• OTHER ISSUES IN INTELLECTUAL DISABILITY
• CONCLUSION
• REFERENCES
INTRODUCTION
• Intellectual disability refers to a developmental disability presenting
in early childhood years, although in some cases it cannot be
diagnosed until the child is older than 5 years of age, when
standardized measures of developmental skills become more
reliable and valid.
• The terms used to refer to intellectual disability have undergone
numerous changes over the last century.
• In the nineteenth and early twentieth centuries, the word ‘idiot’
was used for people with severe intellectual impairment and
‘imbecile’ for those with moderate impairment. Other words are
“feebleminded”, “morons,” “subnormals” and “retards”
• The special study and care of such people was known as the field of
mental deficiency.
• Due to stigma, they were replaced by the terms mental
subnormality and mental retardation.
• ‘Intellectual disability’ is generally the preferred term and has been
adopted in DSM-5 although ‘mental retardation’ is still used in ICD-
10 and ‘learning disability’ in the UK
• The definition of intellectual disability involves two core
components: a general deficit in cognitive functioning, which
emerges during childhood (American Psychiatric Association, 2000;
World Health Organization, 1996).
• A third component, deficit in adaptive behavior, is sometimes
added to the definition although this is more controversial.
• First, classificatory systems differ in the extent to which such
deficits are seen as an inherent characteristic of the deficit in
cognitive functioning or as an independent characteristic whose
presence needs to be determined for the classification to apply.
• Second, at present there is no consensus on how such
“impairments” or “deficits” in social functioning and/or adaptive
behavior should be operationalized.
• According to the American Association on Intellectual and
Developmental Disability (AAIDD): defines intellectual disability as a
disability characterized by significant limitations in both intellectual
functioning (reasoning, learning, and problem solving) and in
adaptive behavior (conceptual, social, and practical skills) that
emerges before the age of 18 years.
• This is a widely accepted definition that led to the consensus that
assessment of both social adaptation and intelligence quotient (IQ)
are necessary to determine the level of intellectual disability.
• DSM-5 places intellectual disability in the broader category of
neurodevelopmental disorders and defines intellectual disability as
involving ‘impairments of general mental abilities that impact
adaptive functioning in three domains, or areas’. These domains
determine how well an individual can cope with everyday life.
• 1. conceptual skills- include reading, numbers, money, time, and
communication skills
• 2. practical life skills- include feeding, bathing, dressing,
occupational skills, and navigational skills.
• 3. social skills- include understanding and following social rules and
customs, obeying laws, and detecting the motivations of others in
order to avoid victimization and deception
• When considering the problems of people with intellectual
disability, the original World Health Organization (WHO)
classification of impairment, disability, and handicap is useful
• The WHO now employs a more positive terminology, with activity
replacing ‘disability’, and participation replacing ‘handicap’.
• Impairment: is of the central nervous system. Any loss or
abnormality of psychological, physiological or anatomical structure
or function.
• Disability: limitation of activity (resulting from an impairment) in
learning and acquiring new skills. Any restriction or lack of ability to
perform an activity in the manner or within the range considered
normal for a human being.
• Handicap: limited participation, depending on the degree of
disability that limits or prevents the fulfillment of a role that is
normal.
HISTORICAL BACKGROUND
• Evidence for the recognition and treatment of intellectual disability
dates back to the earliest of medical writings by Hippocrates, Galen
and Avicenna.
• Esquirol (1938) is credited as the first medical writer to define the
disorder and he distinguished intellectual disability from mental
illness.
• A fundamental distinction, first made by Esquirol in 1845, is drawn
between general intellectual impairment starting in early childhood
(intellectual disability) and intellectual impairment developing later
in life (dementia).
• The modern history for the field of intellectual disability began in
the late 18th and early 19th century when Jean-Marc Itard
attempted a natural experiment to educate a wild child discovered
in the forest of Aveyron, France.
• Howe and Wilbur introduced the approach to educating individuals
with intellectual disability in the US with the establishment of
training schools.
• Gradually, many of these institutions had residents numbering in
the hundreds and the focus began to shift away from education and
more toward custodial care.
• Since the mid-1960s, many fewer persons with intellectual disability
have been institutionalized in the US.
• The move towards “deinstitutionalization” has arisen from many
sources;
• Impetus for change came from growing concerns about the effects
of large institutions, forms of treatment, and rights of the mentally
handicapped. In the 1960s, official enquiries found evidence of
abuse, malpractice, and neglect
• The philosophy of “normalization” is perhaps the most important
force that led to deinstitutionalization
• This term refers to the general approach of providing a pattern of
life as near normal as possible. Normalization implies that almost all
people with intellectual disability will live in the community,
participating in normal activities and relationships, making choices,
and having full social opportunities.
• Children are brought up whenever possible with their families, and
adults are encouraged to live as independently as is feasible. For
the few who need special social and health care, accommodation
and activities are designed to be as close as possible to those of
family life.
• Over the past 50 years, many states in the US have closed their
institutions, and the remaining facilities have become much smaller
and have people with the most severe impairment, many of whom
have severe behaviour problems, or motor or sensory disabilities.
• Early in the twentieth century, Binet’s tests of intelligence provided
quantitative criteria for ascertaining intellectual disability. These
tests also made it possible to identify lesser degrees of the
condition that might not be obvious otherwise.
• Unfortunately, it was widely assumed at the time that people with
such lesser degrees of intellectual impairment were socially
incompetent and required institutional care
• Similar views were reflected in the legislation of the time. For
example, in England and Wales the Idiots Act of 1886 made a
simple distinction between idiocy (more severe) and imbecility (less
severe).
• In 1913, the Mental Deficiency Act added a third category for
people who ‘from an early age display some permanent mental
defect coupled with strong vicious or criminal propensities in which
punishment has had little or no effect’.
• As a result of this legislation, people of normal or near normal
intelligence were admitted to hospital for long periods simply
because their behaviour deviated from the values of society.
• The last 20yrs have seen enormous changes in the way that people
with intellectual disabilities are viewed and treated. The large
institutions are largely gone and the majority of patients live either
in their own homes or in a small community placement with paid
carers.
• This design of care provision has come a long way but there will
always be a need to keep on improving.
• Societal views of disability in Nigeria is largely influenced by culture
and religon, with some persons even neglected by family, killed as
part of rituals or practices that flow from traditional religious belief
system.
• The story of Damola Roberts, a special Olympic athlete who grew
up in Nigeria with intellectual disability resonates the plight of
persons with that challenge in the country. According to Roberts, as
a child he was laughed at, made to eat grass and sand and sadly,
even ignored in school by his own sister.
EPIDEMIOLOGY
• It is estimated that 1 per cent of the world’s population suffers from
intellectual disability.
• A current estimate for the UK is 9– 14 in 1000 children, and 3–8 in
1000 adults
• In conservative terms, there are approximately about 2 million
persons in Nigeria who may be referred to as persons with
intellectual disabilities who continue to suffer several challenges
ranging from economic to non-inclusion in the society.
• In recent years, the incidence has fallen substantially, because of
the improvement in preventable prenatal and perinatal causes of
severe intellectual disabilities.
• However, the prevalence has not fallen, and in fact is expected to
have risen by over 10% as at 2020. The preserved or increasing
prevalence despite reduced incidence reflects two factors.
• First, people with intellectual disability, particularly those with
Down’s syndrome, are living longer. This has also affected the age
distribution of people with severe intellectual disability, so that the
numbers of adults have increased.
• Secondly, improvements in maternal and neonatal care, especially
those born extremely premature (below 32 weeks’ gestation) are
resulting in a growing number of children with intellectual disability,
especially those in the severe and profound categories, who have
survived significant events.
• The prevalence and incidence of ID vary according to gender, age,
ethnicity and socioeconomic circumstances.
• Most studies report that males are more likely than females to have
both severe ID (average male : female ratio 1.2:1) and mild ID
(average male : female ratio 1.6:1).
• It has been suggested that sex-linked genetic factors, male
vulnerability to insult and social processes in labeling and
classification partly account for the majority of males with ID
• Most studies have reported an increase in the prevalence of both
severe and mild ID throughout childhood, with prevalence peaking
at 10–20 years of age
• Estimating the impact of ethnicity on the prevalence and incidence
of ID is difficult as other important factors like poverty, access to
health care, lifestyles, communication barriers and uptake of
specialist services also vary among ethnic groups.
• There is a strong association between lower socioeconomic position
and higher prevalence rates of mild and moderate, but probably not
severe, ID
AETIOLOGY
• Intellectual disability is sometimes divided into syndromic and non-
syndromic forms. Syndromic intellectual disability refers to the
presence of additional medical or behavioural features (which allow
a ‘syndrome’ to be diagnosed); if not, the term non- syndromic
intellectual disability is used.
• Genetic factors are a major cause of intellectual disability as IQ is
heritable. This aspect of genetic predisposition to intelligence
reflects the cumulative effects, and interactions, of a large number
of genes, most of which have yet to be identified.
• Environmental factors are conveniently divided into prenatal,
perinatal, and postnatal factors, reflecting the time at which they
are believed to have occurred.
• Environmental factors are more significant in low- and middle-
income countries and where health care provision or general health
are poorer, and they may be affected by local factors (e.g. areas of
low iodine predispose to congenital hypothyroidism).
• Social as well as biological factors should be considered in the
environmental category. Even though the evidence remains
inconclusive, it is notable that low intelligence is related to, and
predicted by, psychosocial factors such as lower social class,
poverty, and an unstable family environment.
Genetic causes
• Chromosomal disorders
• Trisomies - Down’s syndrome, Edward’s syndrome
• Other aneuploidies Turner’s syndrome (XO), Klinefelter’s syndrome
(XXY)
• X-linked - Fragile X syndrome, Coffin–Lowry syndrome
• Copy number variation
• Angelman syndrome,
• Velocardiofacial syndrome
• Cri du chat
• Single gene disorders
• Autosomal dominant
Neurofibromatosis, tuberous sclerosis
• Autosomal recessive:
Phenylketonuria, Tay–Sachs disease, Hurler’s syndrome
• X-linked
• Rett syndrome
• Mitochondrial disorders
• Complex (non-Mendelian) disorders
Environmental factors
• Prenatal
• Infections - Rubella, toxoplasmosis, syphilis, HIV
• Toxins - Fetal alcohol syndrome, lead poisoning
• Maternal - Pre-eclampsia, placental insufficiency, young maternal
age
• Nutritional - Iodine deficiency, severe malnutrition
• Immune - Rhesus incompatibility
• Perinatal
• Obstetric complications - Brain injury, cerebral palsy
• Complications of prematurity, low birth weight
• Postnatal
• Injury such as head injury
• Jaundice
• Infections like meningitis, encephalitis, measles, etc
• Malnutrition
• Degenerative disorders such as the leukodystrophies
• Toxic disorders such as lead poisoning
• Child neglect and inadequate caretaking which may deprive an
infant of physical and emotional nurturance, leading to failure to
thrive syndromes.
COMORBIDITIES
• PSYCHOTIC DISORDERS
• Epidemiological studies available suggest increased prevalence of
psychotic disorders among individuals with intellectual disability.
Schizophrenia affects 3–4% of people with intellectual disability,
compared with less than 1% in the general population.
• Clinically, delusions may be less elaborate than in patients with
schizophrenia of normal intelligence, hallucinations may have a
simpler content, and thought disorder is difficult to identify. When
IQ is less than 45, it is difficult to make the diagnosis with any
certainty.
• Some of the symptoms of underlying brain damage, such as
stereotyped movements and social withdrawal, may wrongly
suggest schizophrenia, so a comparison of current with previous
behaviour is always valuable.
• MOOD DISORDERS
• The rate of depressive disorders is estimated to lie between 3% and
6%— slightly higher than that of the general population .However,
people with intellectual disability are less likely to complain of
mood changes or to express depressive ideation.
• Diagnosis has to be made mainly on the basis of an appearance of
sadness, changes in appetite and sleep, and behavioural changes of
retardation or agitation.
• Severely depressed patients with adequate verbal abilities may
describe hallucinations and delusions.
• Mania has to be diagnosed on the basis of hyperactivity and
behavioural signs of excitement, irritability, or nervousness.
• The rate of suicide in people with moderate and more severe
intellectual disability is lower than in the general population.
• ANXIETY DISORDERS AND RELATED CONDITIONS
• Adjustment disorders are common among people with intellectual
disability, occurring when there are changes in the routine of their
lives.
• Anxiety disorders are also frequent, especially at times of stress,
and social anxiety is often seen in individuals with fragile X
syndrome.
• Obsessive compulsive disorders and somatoform disorders are also
found.
• EATING DISORDERS
• Overeating and unusual dietary preferences are frequent among
people with intellectual disability.
• The prevalence of obesity among young people with intellectual
disability is almost double that of the general population and it is
unclear if this is because of mealtime behaviours and/ or infrequent
physical activity
• Abnormal eating behaviours, including pica, are not uncommon,
but classical eating disorders appear to be less common than in the
general population.
• Overeating and obesity are features of Prader–Willi syndrome .
• DELIRIUM AND DEMENTIA
• Delirium. This may occur as a response to infection, medication,
and other precipitating factors. As in people of normal intelligence,
delirium in people with intellectual disability is more common in
childhood and in old age than at other ages.
• Disturbed behaviour due to delirium is sometimes the first
indication of physical illness.
• Dementia. As the life expectancy of people with intellectual
disability increases, dementia in later life is becoming more
common, with a prevalence of 18.3% in those over 65 years (2-3
times more than the general population).
• Alzheimer’s disease is particularly common among people with
Down’s syndrome
• DISORDERS FIRST DIAGNOSED IN CHILDHOOD AND ADOLESCENCE
• Many of the disorders in this category are more frequent in children
with intellectual disability than in the general population, and they
are more likely to continue into adulthood.
• It is important to be aware that relatively specific developmental
disorders of scholastic skills, speech, and language and motor
function may occur alongside more global intellectual disability.
• ASD AND ADHD
• Hyperactive behaviour and autistic- like behaviour are frequent
symptoms of intellectual disability. In addition, the diagnoses of
ASD and ADHD are more common for those with intellectual
disability than among the general population.
• There is a particular comorbidity between intellectual disability and
ASDs, probably reflecting an overlap in their aetiology, especially
with regard to genetic factor.
• ABNORMAL MOVEMENTS
• Stereotypes, mannerisms, and rhythmic movement disorders
(including head banging and rocking) occur in about 40% of children
and 20% of adults with severe intellectual disability.
• Repeated self-injurious behaviours are less common but important.
• There is a specific association with Lesch–Nyhan syndrome, in
which the biting away of the corner of a lip is common. Prader–Willi
syndrome is strongly associated with a pattern of self-injury where
patients pick at their skin.
• SLEEP DISORDERS
• Impaired sleep is common in people with intellectual disability, with
prevalence estimates ranging from 9% to 34%
• Sleep disorders may be associated with subsequent challenging
behaviours and a worsening of cognitive impairment.
• The high rate of sleep disorders is accounted for by five factors:
● Coexisting damage to brain structures that are important for the
sleep– wake cycle.
● Epileptic seizures that start during sleep.
● Epilepsy- related sleep instability that disrupts sleep architecture.
● Structural abnormalities in the upper respiratory tract causing sleep
apnoea (particularly common among people with Down’s syndrome).
● Poor sleep hygiene.
• PHYSICAL DISORDERS
• People with intellectual disabilities experience a greater variety and
complexity of physical health problems than the rest of the
population, but may not complain of feeling ill, nor be able to
articulate their symptoms, and conditions may be noticed only
because of changes in behaviour.
• Sensory and motor disabilities and incontinence are the most
important physical disorders in people with intellectual disability.
Only one- third are continent, ambulant, and without severe
behaviour problems.
• Sensory disorders add an important additional obstacle to normal
cognitive development. Motor disabilities include spasticity, ataxia,
and athetosis.
• Ear infections and dental caries are common in this population.
• Epilepsy is a frequent and clinically important problem in
intellectual disability. Around 22% of people with intellectual
disability have a history of epilepsy, compared with 5% in the
general population
• The prevalence increases with the severity of intellectual
disabilities, with lifetime history of epilepsy estimated to be 12% in
people with Down’s syndrome, 15% in mild to moderate intellectual
disability, and 30% in severe and profound intellectual disability.
The risk appears higher among those with additional neurological
diagnoses, such as cerebral palsy and those with ASD.
• Epilepsy is also more commonly associated with fragile X syndrome,
tuberous sclerosis, Angelman syndrome, and Rett syndrome, while
certain epilepsy syndromes, such as West syndrome and Lennox–
Gastaut syndrome, are more common among people with
intellectual disability
BEHAVIOUR THAT CHALLENGES
• Also problem behaviour, is used to describe problematic behaviour
that is relatively specific to intellectual disability and is associated
with neurodevelopmental disorders such as ASD.
• It describes behaviour of an intensity or frequency sufficient to
impair the physical safety of a person with intellectual disability, to
pose a danger to others, or to make participation in the community
difficult.
• Those who present with behaviour that challenges are often
marginalized, stigmatized, disempowered, and excluded from
mainstream society as it often provokes punitive or restrictive
responses
• It is probable that around 20% of intellectually disabled children
and adolescents, and 15% of intellectually disabled adults have
some form of behaviour that challenges
• CAUSES:
• Physical: pain, discomfort, malaise
• Psychiatric and neuropsychiatric disorder: mood disorders,
psychosis, anxiety, obsessive–compulsive disorders, ADHD,
dementia
• Psychological trauma: reaction to abuse or loss; or wish to escape
an unpleasant situation
• Communication difficulties: hearing loss, unclear communication,
insufficient vocabulary or means of expression, difficulties
understanding communication of others
• Phenotype-related behaviours: Prader–Willi syndrome, Lesch–
Nyhan syndrome, Williams syndrome
• Understimulation or overstimulation
• Desire for attention or other reward
• Side effects of medications
• It is essential that the behaviour is understood in the context of that
individual and their environment, and therefore any intervention
must address the person, environment, and the interaction
between the two.
• The person might be expressing unhappiness in their current
environment and the complexities of assessment might require a
comprehensive and multidisciplinary assessment, including a
functional assessment of behaviour, underlying medical and organic
factors, psychological/ psychiatric factors, communication, and
social/ environmental factors.
• Intervention should be delivered in a person- centred context This
can include proactive and reactive strategies, psychotherapy,
communication, positive programming, physical and/ or medical,
and psychopharmacological. Behavioural treatment is the most
widely used treatment.
CLASSIFICATION & CLINICAL FEATURES
• Level of IQ is a key criterion in defining intellectual disability, with IQ
tests designed to be normally distributed with a mean of 100 and a
standard deviation of 15.
• DSM- 5 intellectual disability is considered to be approximately two
standard deviations or more below the population, which equals an
IQ score of about 70 or below.
• The categories broadly map onto the ICD-10 subtypes that are
made according to IQ: mild (IQ 50–70); moderate (IQ 35– 49);
severe (IQ 20– 34); profound (IQ below 20).
• MILD INTELLECTUAL DISABILITY (IQ 50-70)
• People with mild learning disability account for about 85% of those
with learning disability. Usually their appearance is unremarkable
and any sensory or motor deficits are slight.
• Most people in this group develop more or less normal language
abilities and social behaviour during the preschool years, and their
learning disability may never be formally identified.
• In adulthood, most people with mild learning disability can live
independently in ordinary surroundings, although they may need
help in parenting and coping with family responsibilities, housing,
and employment, or when under unusual stress.
• MODERATE INTELLECTUAL DISABILITY (IQ 35-49)
• People in this group account for about 10% of those with learning
disability.
• Many have better receptive than expressive language skills, which is
a potent cause of frustration and behaviour problems. Speech is
usually relatively simple, and is often better understood by people
who know the patient well. Many make use of simplified signing
systems such as Makaton sign language.
• Activities of daily living such as dressing, feeding, and attention to
hygiene can be acquired over time, but other activities of daily
living, such as the use of money and road sense, generally require
support. Similarly, supported employment and residential provision
are the rule.
• SEVERE INTELLECTUAL DISABILITY (IQ 20-34)
• It is difficult to estimate IQ accurately when the score is below 34
because of the difficulty in administering the tests in a valid manner
to individuals in this group. Estimates suggest that people with
severe learning disability account for about 3–4 % of the learning
disabled. In the preschool years their development is usually greatly
slowed.
• Eventually many people can be helped to look after themselves
under close supervision, and to communicate in a simple way—for
example, by using objects of reference.
• As adults they can undertake simple tasks and engage in limited
social activities, but they need supervision and a clear structure to
their lives.
• PROFOUND INTELLECTUAL DISABILITY (IQ BELOW 20)
• People in this group account for 1–2 % of those with intellectual
disability.
• Development across a range of domains tends to be around the
level expected of a 12- month- old infant.
• Accordingly, people with profound intellectual disability are a highly
vulnerable group who require considerable support and
supervision, even for simple activities of daily living.
MANAGEMENT
• Assessment of a person with suspected intellectual disability is
directed towards five main areas:
● the cause and severity of the disability
● intellectual and social skills development
● associated medical conditions
● associated psychiatric disorders
● assessment of needs.
• Full assessment involves several stages, including
• history- taking,
• examination of the mental state,
• physical examination,
• genetic and other laboratory investigations,
• developmental testing,
• functional behavioural assessment,
• analysis of the interactions between the disabled person and the
family and the social support systems, and other aspects of
adjustment
• History taking
• Family history: Parents: ages; consanguinity; medical history; any
previous pregnancies (including abortions, stillbirths). Wider family:
any history of ID; specific cognitive impairments; congenital
abnormalities; neurological or psychiatric disorders.
• Gestational history: General maternal health and nutrition;
maternal infections; exposure to medication, drug and alcohol use,
toxins, radiation; chronic medical conditions; history of pre-
eclampsia, abnormal intrauterine growth, or foetal movements.
• Birth of child: Gestational age; whether multiple pregnancy (birth
order); duration of labour; mode of delivery; any complications; any
placental abnormalities. Examination of birth records (Apgar scores,
weight, length, head circumference).
• Neonatal history: respiratory distress, infections, hypoglycaemia,
hyperbilirubinaemia,
• Childhood history: Weight gain, growth pattern, feeding pattern,
sleeping pattern, early developmental milestones. History of
childhood illnesses (esp. CNS infections or seizures,
metabolic/endocrine disorders) and accidents.
• Results should be obtained from any prior developmental,
psychological, and psychiatric evaluations
• General systemic enquiry.
• Detailed behavioral, social, and educational history, as well as a
record of medications.
• In addition to assessment of the patient, attention should also be
focused on the patient’s living situation, relationships and current
stressors, noting particularly any recent changes.
• A high index of suspicion for abuse and neglect is needed
• Sufficient time should be allocated for the evaluation. This should
include an opportunity for the parents to communicate their
concerns, perceptions, and misconceptions
• Mental state examination
• Detailed observation of behavior, including attention, impulsivity,
activity, affect, motor mannerisms, disordered social
communication, and internalizing (eg, anxiety, depression) and
externalizing behaviors (eg, oppositional and aggressive behavior)
• Many people with ID attend and concentrate poorly, so the
interview should be carried out informally and questions should be
simplified based on the child’s level of understanding.
• Perception and thought disorders
• Parent/family interactions and behaviors may be observed for any
features suggesting parental depression, parenting characteristics,
or suspicion of child abuse.
• Parents may manifest features of genetically mediated disorders
themselves, which would be relevant to their child's evaluation,
diagnosis, and intervention.
• Physical examination
• A systematic physical examination should include noting the child’s
overall appearance, looking for dysmorphic features and other
physical signs suggestive of specific disorders.
• Head circumference should be recorded. Neurological examination
is important and should include particular attention to impairments
of vision and hearing.
• Assessment of the heart, lungs, abdomen, genitourinary system,
back, extremities, and skin.
• Laboratory and genetic investigation
• Standard tests will include FBC, U&Es, LFTs, TFTs, glucose, infection
screening (blood and urine), and serology (ToRCH—toxoplasmosis,
rubella, cytomegalovirus, herpes simplex virus; HIV).
• Where dysmorphic features are evident, or physical signs indicate,
arrange X-rays of skull, vertebrae, chest, abdomen, hands, feet, and
long bones; cardiac/abdominal ultrasound.
• If metabolic disorder is suspected (e.g. progressive course), arrange
screening tests of blood and urine.
• Other more detailed investigations may include neurophysiological
tests (EEG), neuroimaging (cranial ultrasound, CT/ MRI, functional
imaging), (neuro)pathological examination (fibroblast culture;
biopsies—muscle, skin, rectum).
• As many cases of intellectual disability, especially moderate and
severe forms, are caused by a specific chromosomal or genetic
abnormality, genetic investigations are a major component of
assessment
• Karyotyping (G-banding, high resolution banding, fluorescence in
situ hybridization—FISH) or other more specific genetic tests (e.g.
FraX DNA testing).
• A clinical geneticist can help with the interpretation of test results,
and sharing the information with the family and addressing their
questions.
• Genetic investigations are also critical in preventative screening for
intellectual disability
• Developmental testing
• This assessment is based on a combination of clinical experience
and standardized methods of measuring intelligence, language,
motor performance, and social skills.
• Although the IQ is the best general index of intellectual
development, it is not reliable in the very young or among people
who have severe to profound degrees of intellectual disabilities.
• There are norm- referenced tests such as the Wechsler Adult
Intelligence Scale (WAIS) and other IQ measures, criterion-
referenced tests that apply to particular skills without reference to
population norms, tests of adaptive behaviour in social settings,
and assessments of behavioural functioning.
• Wechsler Intelligence Scale for Children (WISC-IV) and for adults
(WAIS-IV). Gives a full scale IQ and measures cognitive functioning
within four domains of verbal comprehension, perceptual
reasoning, processing speed and working memory. The WISC-IV is
validated for use between 6 – 16 years; the WAIS-IV for 16 – 90
years.
• Standard Progressive Matrice (SPM) or Raven’s progressive matrices
(RPM) nonverbally assesses intelligence in children and adults
through abstract reasoning tasks.
• Vineland Adaptive Behaviour Scale
• The British Ability Scales and Differential Ability Scales
• The Disability Assessment Scale
• Autism Behaviour Checklist (ABC)
• ABAS (Harrison and Oakland, 2000)
• British (Peabody) Picture Vocabulary Test
• Reynell Scales of Language
• Life Experiences checklist
• Functional behavioural assessment
• The functional assessment of behaviour involves an assessment of
events before, during, and immediately after the behaviour takes
place.
• It is based on observations reported by family, carers, and members
of the clinical team. It is concerned with abilities related to self-
care, and social abilities, including communication, sensory motor
skills, and social relationships.
• Assessment of social interaction
• This assessment is concerned with the interaction between the
person with intellectual disability and the individuals closely
involved in their care.
• It is also concerned with opportunities for learning new skills,
making relationships, and achieving more choice. If the person with
intellectual disability has reasonable language ability, it is usually
possible to obtain much of the information from him or her. If
language ability is less well developed, the account has to be
obtained mainly from informants.
• It is often appropriate to ask parents, teachers, or care staff to keep
records of behaviours such as eating, sleeping, and general activity
so that problems can be identified and quantified.
• Assessment of needs
• As the diagnostic assessment progresses, the likely needs of the
patient require careful consideration, too, as these will form the
basis of the care package and management plan to be
implemented.
• The needs assessment brings together the social, emotional, and
health needs of the person, and takes into account their views and
wishes as well as those of their significant others.
• Follow up assessment
• Once intellectual disability has been diagnosed, regular reviews are
required.
• For children, these are usually carried out by a multidisciplinary
child health team together with teachers and social workers. The
child psychiatrist liaises with the team, and has a particular role
where the child has emotional, behavioural, or other psychiatric
problems.
• When the child reaches school- leaving age, a thorough review is
important. This should assess the need for further education, the
prospects for employment and independent living, and the need for
ongoing specialist physical and psychological healthcare
• The current predominant principle of care is normalization, an idea
that was developed in Scandinavia in the 1960s.
• The general approach to care is educational and psychosocial,
together with appropriate psychiatric interventions for mental
health problems.
• The multidisciplinary team providing continuing health care
benefits by including psychiatrists, psychologists, speech therapists,
nurses, occupational therapists, and physiotherapists.
• One aspect of the policy of normalization is that children with
intellectual disability should be educated as far as possible within
inclusive preschool settings and mainstream schools. The extent to
which this is done varies in different countries
• Research has consistently shown the improved cognitive and social
outcomes for children with intellectual disability, if educational
interventions are commenced early and, if possible, in inclusive play
group or nursery classes
• Education in an ordinary school offers the advantages of more
normal social surroundings, social integration, and the expectation
of progress, but it may have the disadvantage of a lack of special
teaching skills and equipment.
• Others need to attend special educational programmes for children
with intellectual disabilities. It is still not certain which intellectually
disabled children benefit from ordinary schooling.
• It is now widely accepted that parents should be supported in
caring for their intellectually disabled children at home. If care is
too heavy a burden for the parents because of their other family
commitments, the child with intellectual disability should, if
possible, be placed in another family.
• Adults should be supported in ordinary housing, or placed with a
family, or in suitable lodgings, or in a small residential group home.
Staff need to encourage the residents to develop their social skills
and to live as normally as possible.
• Medical treatment: people with intellectual disability should have
the same access to general and specialist medical services as other
citizens, but they require extra support if they are to obtain full
benefit.
• Families and carers are helped when care is coordinated by a single
person, so that they do not receive conflicting advice
• People with intellectual disability have increased health needs and
it is therefore generally recommended that annual health checks be
performed. This helps to screen for treatable conditions and
improve their quality of life, as well as preventing early death.
• Psychiatric treatment in some countries it is provided by generic
mental health services, but in the UK it is generally provided by staff
who specialize in the care of people with intellectual disability.
• Psychiatric disorder in people with intellectual disability usually
comes to notice through changes in behaviour. It should be
remembered, however, that behavioural change can also result
from physical illness or from stressful events, both of which should
be carefully excluded.
• In the most disabled, and especially those with sensory deficits,
behavioural disturbance may be due to understimulation and
frustration owing to the inability to communicate wishes and
needs.
• Once the cause is clear, the treatment follows
• The indications for psychotropic drugs are generally the same as for
patients of normal intelligence
• However, the psychiatrist has particular responsibility for organizing
effective ongoing monitoring, including regular physical
examination especially important for patients with severe
communication impairments who cannot describe adverse effects.
• Also, neurologically impaired patients may develop adverse effects
at lower doses and suffer from oversedation, delirium, and
extrapyramidal symptoms.
• Antipsychotic and benzodiazepine drugs are often useful in the
short- term control of behaviour problems, generally at much lower
doses than would be prescribed in the general population.
• Antidepressants: SSRI preferred
• Anxiolytics
• Mood Stabilizers
• Stimulants
• Antiepileptic drug treatment is frequently required, given the
prevalence of epilepsy in intellectual disability.
• Some of the key psychological treatment currently used include
behaviour therapy, cognitive behaviour therapy, psychodynamic
psychotherapy, systemic family therapy, and a range of arts
therapies
• Cognitive therapies can be attempted with some patients with
higher levels of verbal ability
• Behavioural methods are helpful to people with severe intellectual
disability as some of the methods do not require language.
• May be used to help teach basic skills (e.g. feeding, dressing,
toileting), establish normal behaviour patterns (e.g. sleep), or more
complex skills (e.g. social skills, relaxation techniques, assertiveness
training).
• Behavioural techniques may also be used to alter maladaptive
patterns of behaviour (e.g. inappropriate sexual behaviour, pica,
phobias)
• Often parents and teachers are taught to carry out the training so
that it can be maintained in the patient’s everyday environment.
• Modelling and prompting in the early stages of training in skills
• Reward appropriate behaviour
• Environmental modification to remove undesired triggers
• Time-out (seclusion) for aggressive behaviours
• Help for families: Having a child with intellectual disability can have
a major emotional and practical impact on the family, and support
is needed for the family from the time that the diagnosis is first
made
• They may need to hear the explanation several times before they
can absorb all of its implications. Adequate time must be allowed to
explain the prognosis, indicate what help can be provided, and
discuss the part that the parents can play in helping their child to
achieve his or her full potential.
• In addition to practical assistance, the parents might need
continuing psychological support
Admission of people with ID
• The degree of ID or the specific cognitive impairments requires a
well-structured, predictable environment that cannot be provided
elsewhere.
• The degree of physical impairment requires more intensive
specialist nursing or a safer environment where medical care is
close at hand (e.g. severe treatment-resistant epilepsy).
• The severity of behavioural problems prohibits management at
home (e.g. abnormally aggressive or disinhibited behaviour which
constitutes a serious risk of harm to the patient or to others).
• The person requires treatment for a comorbid psychiatric disorder,
which has failed to respond to initial treatment.
• Respite placements to allow individuals and their families some
relief from the intensity of long-term care.
PREVENTION
• Primary prevention consists of genetic counselling, the education of
pregnant women (and the population in general) about behaviours
that may put the fetus at risk, early detection of fetal abnormalities
during pregnancy, and good obstetric and perinatal care.
• Secondary prevention aims to prevent the progression of disability
by either medical or psychological means (‘enriching’ education and
early attempts to reduce behavioural problems)
• Tertiary prevention helps to minimize the sequelae or consequent
disabilities.
• Least contentious among approaches to prevention are those that
seek to avoid exposure to social and environmental risk factors for
ID such as poverty, undernutrition, environmental toxins, infections,
poor obstetric care, understimulating home environments,
intrafamilial marriage, child abuse or low maternal education.
• It has been estimated, for example, that reducing the proportion of
children living in poverty who are exposed to environmental
deprivation could decrease the prevalence of ID in the USA by
approximately 10%
OTHER ISSUES IN ID
• Sex, relationships and parenthood: Most people with intellectual
disability develop sexual interests in the same way as other people.
Yet although people with intellectual disability are encouraged to
live as normally as possible in other ways, sexual expression is
usually discouraged by parents and carers, and sexual feelings may
not even be discussed
• In the past, sexual activity of people with intellectual disability was
strongly discouraged because it was feared that they might produce
disabled children or that they will not be good parents.
• Social exclusion, bullying, and stigma are commonplace for children
raised by intellectually disabled parents, and they are at high risk of
being removed from parental care.
• Maltreatment and abuse: There is a strong association between
disability (physical and intellectual) and child maltreatment, and
children are therefore significantly more likely to experience abuse
than their non- disabled peers, more so if they have communication
difficulties and behavioural disorder
• There is no convincing evidence that sexual or physical abuse is
more frequent in families with an intellectually disabled child.
Instead, the sequelae of abuse are often found in people with
intellectual disability who were brought up in an institution
• There is also evidence to suggest that abuse is often underreported
in disabled children.
• This might be for a number of reasons, including
o difficulty communicating,
o perceived threat,
o fears of being separated from family,
o and tolerance of abuse to be accepted or receive rewards or
affection.
• When abuse has occurred, it may lead to psychological problems
concurrently and later in life which are similar to those experienced
by any other victim of such abuse
• Growing old: Several problems arise more frequently as people
with intellectual disability live longer, other than just the
emergence of dementia and physical health problems
• When the parents are the carers, they may find care increasingly
burdensome as they grow old. Such parents are often concerned
about the future of their child when they have died, yet can be
reluctant to arrange alternative care while they are still alive.
• The older person with intellectual disability also faces special
challenges. If their parents die first, they face problems of
bereavement and increased isolation.
• These bereaved people should be helped to come to terms with the
loss, using the principles that apply generally to grief counselling,
but choosing appropriately simple forms of communication, such as
life story work, memory boxes, using photographs, storytelling, art
work, and films
• Effects on the family: When a newborn child is found to be
disabled, many parents can be distressed.
• Frequently the diagnosis of intellectual disability is not made until
after the first year of life, and the parents then have to change their
hopes and expectations for the child.
• They can experience prolonged depression, guilt, shame, or anger,
and have difficulty in coping with the many practical and financial
problems.
• A few reject their children, some become overinvolved in their care,
sacrificing other important aspects of family life, while others seek
repeatedly for a cause to explain the intellectual disability.
• Most families eventually achieve a satisfactory adjustment,
although the temptation to overindulge the child can remain.
However well they adjust psychologically, the parents might still be
faced with the prospect of prolonged dependence, frustration, and
social difficulties. If the child also has a physical disability, these
difficulties can be increased.
• Criminal justice system: People with mild intellectual disability have
higher rates of criminal behaviour than the general population.
• Some of the reasons include Impulsivity, suggestibility, vulnerability
to exploitation, and desire to please are other reasons for
involvement in crime, alongside an increased likelihood in being
detected. Once apprehended, may be more likely to confess.
• Of note, people with intellectual disability may be suggestible and
may therefore give false confessions, so particular care should be
taken when questioning them about an alleged offence.
• The presence of an appropriate adult is important to ensure that
the person with intellectual disability understands the situation and
the questions.
• They are also more likely to be the victims of crime and are
perceived to be poor witnesses.
• The criminal justice system in Nigeria
• Normalization, autonomy and conflicts of interests: The policy of
normalization can create conflicts between the interests of the
intellectually disabled person and those of others
• Normalization can also produce unintended effects. For example, it
requires that intellectually disabled children should be educated in
ordinary schools whenever possible. However, in secondary
schools, children with special needs were found to be bullied three
times more often than other children.
• Other aspects
o sexual activity,
o contraception,
o and parenting
• Many people with severe intellectual disability are unable to give
informed consent, and it is essential to be aware of local legislation
and practice
• If the patient is deemed to lack capacity, steps should be taken to
help the person understand through assistive methods. The least
restrictive option in keeping with the best interests of the
intellectually disabled person should be pursued, usually through
the involvement of a person closely involved in their care and who
knows them well
• Seriously ill patients who refuse potentially life- saving treatments
can prove difficult to deal with in general medical settings.
• Consent to research requires the ability to understand information,
to use the information rationally, to appreciate the consequences of
situations, and to decide between alternatives.
• Any individual who has agreed to take part in research should
understand that they can withdraw consent if they wish, a point
that should be explained with particular care
• In general, no research should be undertaken involving people who
cannot consent, unless the same research cannot be successfully
carried out without involving these people.
• Some may be able to provide verbal rather than written consent.
• Some may need sign language, pictures, or written information in
simple language and a large font size. For some the proposal may
have to be discussed repeatedly. It is also good practice to have
agreement with the carers and the multidisciplinary team
members.
CONCLUSION
• People with intellectual disability consist of a significant population
in our society and their well-being should be of concern to any
society.
• Putting in place the right policies at different levels and advocacy
for these policies could go a long way in improving their ability.
REFERENCES
• Harrison P, Cowen P, Burns T, Fazel M. Shorter Oxford Textbook of
Psychiatry. 7th ed. 2018, Oxford University Press
• Rutter’s Child and Adolescent Psychiatry, 5th Edition, Edited by M.
Rutter, D. V. M. Bishop D. S. Pine, S. Scott, J. Stevenson, E. Taylor
and A. Thapar © 2008 Blackwell Publishing Limited. ISBN: 978-1-
405-14549-7
• Semple D, Smyth R. Oxford Handbook of Psychiatry. 3rd ed. 2013,
Oxford University Press
• Kaplan & Sadock’s comprehensive textbook of psychiatry (10th
Edition). Benjamin J Sadock; Virginia A Sadock; Pedro Ruiz. Wolterz
Kluwer, (2017)
• Elgujja, Abba & Arimoro, Augustine. (2019). Persons with
Intellectual Disability and Access to Justice in Nigeria: Challenges
and the Way Forward.
• Walsh, W. bruce, and Nancy E. Betz. Tests and Assessment. 2nd ed.
Englewood Cliffs, NJ: Prentice Hall, 1990.

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INTELLECTUAL DISABILITY new.pptx

  • 2. OUTLINE • INTRODUCTION • HISTORICAL BACKGROUND • EPIDEMIOLOGY • AETIOLOGY • CLASSIFICATION AND CLINICAL FEATURES • COMORBIDITIES AND BEHAVIOUR THAT CHALLENGES • MANAGEMENT • PREVENTION • OTHER ISSUES IN INTELLECTUAL DISABILITY • CONCLUSION • REFERENCES
  • 3. INTRODUCTION • Intellectual disability refers to a developmental disability presenting in early childhood years, although in some cases it cannot be diagnosed until the child is older than 5 years of age, when standardized measures of developmental skills become more reliable and valid. • The terms used to refer to intellectual disability have undergone numerous changes over the last century. • In the nineteenth and early twentieth centuries, the word ‘idiot’ was used for people with severe intellectual impairment and ‘imbecile’ for those with moderate impairment. Other words are “feebleminded”, “morons,” “subnormals” and “retards”
  • 4. • The special study and care of such people was known as the field of mental deficiency. • Due to stigma, they were replaced by the terms mental subnormality and mental retardation. • ‘Intellectual disability’ is generally the preferred term and has been adopted in DSM-5 although ‘mental retardation’ is still used in ICD- 10 and ‘learning disability’ in the UK • The definition of intellectual disability involves two core components: a general deficit in cognitive functioning, which emerges during childhood (American Psychiatric Association, 2000; World Health Organization, 1996).
  • 5. • A third component, deficit in adaptive behavior, is sometimes added to the definition although this is more controversial. • First, classificatory systems differ in the extent to which such deficits are seen as an inherent characteristic of the deficit in cognitive functioning or as an independent characteristic whose presence needs to be determined for the classification to apply. • Second, at present there is no consensus on how such “impairments” or “deficits” in social functioning and/or adaptive behavior should be operationalized.
  • 6. • According to the American Association on Intellectual and Developmental Disability (AAIDD): defines intellectual disability as a disability characterized by significant limitations in both intellectual functioning (reasoning, learning, and problem solving) and in adaptive behavior (conceptual, social, and practical skills) that emerges before the age of 18 years. • This is a widely accepted definition that led to the consensus that assessment of both social adaptation and intelligence quotient (IQ) are necessary to determine the level of intellectual disability.
  • 7. • DSM-5 places intellectual disability in the broader category of neurodevelopmental disorders and defines intellectual disability as involving ‘impairments of general mental abilities that impact adaptive functioning in three domains, or areas’. These domains determine how well an individual can cope with everyday life. • 1. conceptual skills- include reading, numbers, money, time, and communication skills • 2. practical life skills- include feeding, bathing, dressing, occupational skills, and navigational skills.
  • 8. • 3. social skills- include understanding and following social rules and customs, obeying laws, and detecting the motivations of others in order to avoid victimization and deception • When considering the problems of people with intellectual disability, the original World Health Organization (WHO) classification of impairment, disability, and handicap is useful • The WHO now employs a more positive terminology, with activity replacing ‘disability’, and participation replacing ‘handicap’.
  • 9. • Impairment: is of the central nervous system. Any loss or abnormality of psychological, physiological or anatomical structure or function. • Disability: limitation of activity (resulting from an impairment) in learning and acquiring new skills. Any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being. • Handicap: limited participation, depending on the degree of disability that limits or prevents the fulfillment of a role that is normal.
  • 10. HISTORICAL BACKGROUND • Evidence for the recognition and treatment of intellectual disability dates back to the earliest of medical writings by Hippocrates, Galen and Avicenna. • Esquirol (1938) is credited as the first medical writer to define the disorder and he distinguished intellectual disability from mental illness. • A fundamental distinction, first made by Esquirol in 1845, is drawn between general intellectual impairment starting in early childhood (intellectual disability) and intellectual impairment developing later in life (dementia).
  • 11. • The modern history for the field of intellectual disability began in the late 18th and early 19th century when Jean-Marc Itard attempted a natural experiment to educate a wild child discovered in the forest of Aveyron, France. • Howe and Wilbur introduced the approach to educating individuals with intellectual disability in the US with the establishment of training schools. • Gradually, many of these institutions had residents numbering in the hundreds and the focus began to shift away from education and more toward custodial care. • Since the mid-1960s, many fewer persons with intellectual disability have been institutionalized in the US.
  • 12. • The move towards “deinstitutionalization” has arisen from many sources; • Impetus for change came from growing concerns about the effects of large institutions, forms of treatment, and rights of the mentally handicapped. In the 1960s, official enquiries found evidence of abuse, malpractice, and neglect • The philosophy of “normalization” is perhaps the most important force that led to deinstitutionalization • This term refers to the general approach of providing a pattern of life as near normal as possible. Normalization implies that almost all people with intellectual disability will live in the community, participating in normal activities and relationships, making choices, and having full social opportunities.
  • 13. • Children are brought up whenever possible with their families, and adults are encouraged to live as independently as is feasible. For the few who need special social and health care, accommodation and activities are designed to be as close as possible to those of family life. • Over the past 50 years, many states in the US have closed their institutions, and the remaining facilities have become much smaller and have people with the most severe impairment, many of whom have severe behaviour problems, or motor or sensory disabilities.
  • 14. • Early in the twentieth century, Binet’s tests of intelligence provided quantitative criteria for ascertaining intellectual disability. These tests also made it possible to identify lesser degrees of the condition that might not be obvious otherwise. • Unfortunately, it was widely assumed at the time that people with such lesser degrees of intellectual impairment were socially incompetent and required institutional care • Similar views were reflected in the legislation of the time. For example, in England and Wales the Idiots Act of 1886 made a simple distinction between idiocy (more severe) and imbecility (less severe).
  • 15. • In 1913, the Mental Deficiency Act added a third category for people who ‘from an early age display some permanent mental defect coupled with strong vicious or criminal propensities in which punishment has had little or no effect’. • As a result of this legislation, people of normal or near normal intelligence were admitted to hospital for long periods simply because their behaviour deviated from the values of society. • The last 20yrs have seen enormous changes in the way that people with intellectual disabilities are viewed and treated. The large institutions are largely gone and the majority of patients live either in their own homes or in a small community placement with paid carers.
  • 16. • This design of care provision has come a long way but there will always be a need to keep on improving. • Societal views of disability in Nigeria is largely influenced by culture and religon, with some persons even neglected by family, killed as part of rituals or practices that flow from traditional religious belief system. • The story of Damola Roberts, a special Olympic athlete who grew up in Nigeria with intellectual disability resonates the plight of persons with that challenge in the country. According to Roberts, as a child he was laughed at, made to eat grass and sand and sadly, even ignored in school by his own sister.
  • 17. EPIDEMIOLOGY • It is estimated that 1 per cent of the world’s population suffers from intellectual disability. • A current estimate for the UK is 9– 14 in 1000 children, and 3–8 in 1000 adults • In conservative terms, there are approximately about 2 million persons in Nigeria who may be referred to as persons with intellectual disabilities who continue to suffer several challenges ranging from economic to non-inclusion in the society.
  • 18. • In recent years, the incidence has fallen substantially, because of the improvement in preventable prenatal and perinatal causes of severe intellectual disabilities. • However, the prevalence has not fallen, and in fact is expected to have risen by over 10% as at 2020. The preserved or increasing prevalence despite reduced incidence reflects two factors. • First, people with intellectual disability, particularly those with Down’s syndrome, are living longer. This has also affected the age distribution of people with severe intellectual disability, so that the numbers of adults have increased.
  • 19. • Secondly, improvements in maternal and neonatal care, especially those born extremely premature (below 32 weeks’ gestation) are resulting in a growing number of children with intellectual disability, especially those in the severe and profound categories, who have survived significant events. • The prevalence and incidence of ID vary according to gender, age, ethnicity and socioeconomic circumstances. • Most studies report that males are more likely than females to have both severe ID (average male : female ratio 1.2:1) and mild ID (average male : female ratio 1.6:1).
  • 20. • It has been suggested that sex-linked genetic factors, male vulnerability to insult and social processes in labeling and classification partly account for the majority of males with ID • Most studies have reported an increase in the prevalence of both severe and mild ID throughout childhood, with prevalence peaking at 10–20 years of age • Estimating the impact of ethnicity on the prevalence and incidence of ID is difficult as other important factors like poverty, access to health care, lifestyles, communication barriers and uptake of specialist services also vary among ethnic groups. • There is a strong association between lower socioeconomic position and higher prevalence rates of mild and moderate, but probably not severe, ID
  • 21. AETIOLOGY • Intellectual disability is sometimes divided into syndromic and non- syndromic forms. Syndromic intellectual disability refers to the presence of additional medical or behavioural features (which allow a ‘syndrome’ to be diagnosed); if not, the term non- syndromic intellectual disability is used. • Genetic factors are a major cause of intellectual disability as IQ is heritable. This aspect of genetic predisposition to intelligence reflects the cumulative effects, and interactions, of a large number of genes, most of which have yet to be identified. • Environmental factors are conveniently divided into prenatal, perinatal, and postnatal factors, reflecting the time at which they are believed to have occurred.
  • 22. • Environmental factors are more significant in low- and middle- income countries and where health care provision or general health are poorer, and they may be affected by local factors (e.g. areas of low iodine predispose to congenital hypothyroidism). • Social as well as biological factors should be considered in the environmental category. Even though the evidence remains inconclusive, it is notable that low intelligence is related to, and predicted by, psychosocial factors such as lower social class, poverty, and an unstable family environment.
  • 23. Genetic causes • Chromosomal disorders • Trisomies - Down’s syndrome, Edward’s syndrome • Other aneuploidies Turner’s syndrome (XO), Klinefelter’s syndrome (XXY) • X-linked - Fragile X syndrome, Coffin–Lowry syndrome • Copy number variation • Angelman syndrome, • Velocardiofacial syndrome • Cri du chat
  • 24. • Single gene disorders • Autosomal dominant Neurofibromatosis, tuberous sclerosis • Autosomal recessive: Phenylketonuria, Tay–Sachs disease, Hurler’s syndrome • X-linked • Rett syndrome • Mitochondrial disorders • Complex (non-Mendelian) disorders
  • 25. Environmental factors • Prenatal • Infections - Rubella, toxoplasmosis, syphilis, HIV • Toxins - Fetal alcohol syndrome, lead poisoning • Maternal - Pre-eclampsia, placental insufficiency, young maternal age • Nutritional - Iodine deficiency, severe malnutrition • Immune - Rhesus incompatibility • Perinatal • Obstetric complications - Brain injury, cerebral palsy • Complications of prematurity, low birth weight
  • 26. • Postnatal • Injury such as head injury • Jaundice • Infections like meningitis, encephalitis, measles, etc • Malnutrition • Degenerative disorders such as the leukodystrophies • Toxic disorders such as lead poisoning • Child neglect and inadequate caretaking which may deprive an infant of physical and emotional nurturance, leading to failure to thrive syndromes.
  • 27. COMORBIDITIES • PSYCHOTIC DISORDERS • Epidemiological studies available suggest increased prevalence of psychotic disorders among individuals with intellectual disability. Schizophrenia affects 3–4% of people with intellectual disability, compared with less than 1% in the general population. • Clinically, delusions may be less elaborate than in patients with schizophrenia of normal intelligence, hallucinations may have a simpler content, and thought disorder is difficult to identify. When IQ is less than 45, it is difficult to make the diagnosis with any certainty. • Some of the symptoms of underlying brain damage, such as stereotyped movements and social withdrawal, may wrongly suggest schizophrenia, so a comparison of current with previous behaviour is always valuable.
  • 28. • MOOD DISORDERS • The rate of depressive disorders is estimated to lie between 3% and 6%— slightly higher than that of the general population .However, people with intellectual disability are less likely to complain of mood changes or to express depressive ideation. • Diagnosis has to be made mainly on the basis of an appearance of sadness, changes in appetite and sleep, and behavioural changes of retardation or agitation. • Severely depressed patients with adequate verbal abilities may describe hallucinations and delusions.
  • 29. • Mania has to be diagnosed on the basis of hyperactivity and behavioural signs of excitement, irritability, or nervousness. • The rate of suicide in people with moderate and more severe intellectual disability is lower than in the general population.
  • 30. • ANXIETY DISORDERS AND RELATED CONDITIONS • Adjustment disorders are common among people with intellectual disability, occurring when there are changes in the routine of their lives. • Anxiety disorders are also frequent, especially at times of stress, and social anxiety is often seen in individuals with fragile X syndrome. • Obsessive compulsive disorders and somatoform disorders are also found.
  • 31. • EATING DISORDERS • Overeating and unusual dietary preferences are frequent among people with intellectual disability. • The prevalence of obesity among young people with intellectual disability is almost double that of the general population and it is unclear if this is because of mealtime behaviours and/ or infrequent physical activity • Abnormal eating behaviours, including pica, are not uncommon, but classical eating disorders appear to be less common than in the general population. • Overeating and obesity are features of Prader–Willi syndrome .
  • 32. • DELIRIUM AND DEMENTIA • Delirium. This may occur as a response to infection, medication, and other precipitating factors. As in people of normal intelligence, delirium in people with intellectual disability is more common in childhood and in old age than at other ages. • Disturbed behaviour due to delirium is sometimes the first indication of physical illness. • Dementia. As the life expectancy of people with intellectual disability increases, dementia in later life is becoming more common, with a prevalence of 18.3% in those over 65 years (2-3 times more than the general population). • Alzheimer’s disease is particularly common among people with Down’s syndrome
  • 33. • DISORDERS FIRST DIAGNOSED IN CHILDHOOD AND ADOLESCENCE • Many of the disorders in this category are more frequent in children with intellectual disability than in the general population, and they are more likely to continue into adulthood. • It is important to be aware that relatively specific developmental disorders of scholastic skills, speech, and language and motor function may occur alongside more global intellectual disability.
  • 34. • ASD AND ADHD • Hyperactive behaviour and autistic- like behaviour are frequent symptoms of intellectual disability. In addition, the diagnoses of ASD and ADHD are more common for those with intellectual disability than among the general population. • There is a particular comorbidity between intellectual disability and ASDs, probably reflecting an overlap in their aetiology, especially with regard to genetic factor.
  • 35. • ABNORMAL MOVEMENTS • Stereotypes, mannerisms, and rhythmic movement disorders (including head banging and rocking) occur in about 40% of children and 20% of adults with severe intellectual disability. • Repeated self-injurious behaviours are less common but important. • There is a specific association with Lesch–Nyhan syndrome, in which the biting away of the corner of a lip is common. Prader–Willi syndrome is strongly associated with a pattern of self-injury where patients pick at their skin.
  • 36. • SLEEP DISORDERS • Impaired sleep is common in people with intellectual disability, with prevalence estimates ranging from 9% to 34% • Sleep disorders may be associated with subsequent challenging behaviours and a worsening of cognitive impairment.
  • 37. • The high rate of sleep disorders is accounted for by five factors: ● Coexisting damage to brain structures that are important for the sleep– wake cycle. ● Epileptic seizures that start during sleep. ● Epilepsy- related sleep instability that disrupts sleep architecture. ● Structural abnormalities in the upper respiratory tract causing sleep apnoea (particularly common among people with Down’s syndrome). ● Poor sleep hygiene.
  • 38. • PHYSICAL DISORDERS • People with intellectual disabilities experience a greater variety and complexity of physical health problems than the rest of the population, but may not complain of feeling ill, nor be able to articulate their symptoms, and conditions may be noticed only because of changes in behaviour. • Sensory and motor disabilities and incontinence are the most important physical disorders in people with intellectual disability. Only one- third are continent, ambulant, and without severe behaviour problems.
  • 39. • Sensory disorders add an important additional obstacle to normal cognitive development. Motor disabilities include spasticity, ataxia, and athetosis. • Ear infections and dental caries are common in this population. • Epilepsy is a frequent and clinically important problem in intellectual disability. Around 22% of people with intellectual disability have a history of epilepsy, compared with 5% in the general population
  • 40. • The prevalence increases with the severity of intellectual disabilities, with lifetime history of epilepsy estimated to be 12% in people with Down’s syndrome, 15% in mild to moderate intellectual disability, and 30% in severe and profound intellectual disability. The risk appears higher among those with additional neurological diagnoses, such as cerebral palsy and those with ASD. • Epilepsy is also more commonly associated with fragile X syndrome, tuberous sclerosis, Angelman syndrome, and Rett syndrome, while certain epilepsy syndromes, such as West syndrome and Lennox– Gastaut syndrome, are more common among people with intellectual disability
  • 41. BEHAVIOUR THAT CHALLENGES • Also problem behaviour, is used to describe problematic behaviour that is relatively specific to intellectual disability and is associated with neurodevelopmental disorders such as ASD. • It describes behaviour of an intensity or frequency sufficient to impair the physical safety of a person with intellectual disability, to pose a danger to others, or to make participation in the community difficult. • Those who present with behaviour that challenges are often marginalized, stigmatized, disempowered, and excluded from mainstream society as it often provokes punitive or restrictive responses • It is probable that around 20% of intellectually disabled children and adolescents, and 15% of intellectually disabled adults have some form of behaviour that challenges
  • 42. • CAUSES: • Physical: pain, discomfort, malaise • Psychiatric and neuropsychiatric disorder: mood disorders, psychosis, anxiety, obsessive–compulsive disorders, ADHD, dementia • Psychological trauma: reaction to abuse or loss; or wish to escape an unpleasant situation • Communication difficulties: hearing loss, unclear communication, insufficient vocabulary or means of expression, difficulties understanding communication of others
  • 43. • Phenotype-related behaviours: Prader–Willi syndrome, Lesch– Nyhan syndrome, Williams syndrome • Understimulation or overstimulation • Desire for attention or other reward • Side effects of medications • It is essential that the behaviour is understood in the context of that individual and their environment, and therefore any intervention must address the person, environment, and the interaction between the two.
  • 44. • The person might be expressing unhappiness in their current environment and the complexities of assessment might require a comprehensive and multidisciplinary assessment, including a functional assessment of behaviour, underlying medical and organic factors, psychological/ psychiatric factors, communication, and social/ environmental factors. • Intervention should be delivered in a person- centred context This can include proactive and reactive strategies, psychotherapy, communication, positive programming, physical and/ or medical, and psychopharmacological. Behavioural treatment is the most widely used treatment.
  • 45. CLASSIFICATION & CLINICAL FEATURES • Level of IQ is a key criterion in defining intellectual disability, with IQ tests designed to be normally distributed with a mean of 100 and a standard deviation of 15. • DSM- 5 intellectual disability is considered to be approximately two standard deviations or more below the population, which equals an IQ score of about 70 or below. • The categories broadly map onto the ICD-10 subtypes that are made according to IQ: mild (IQ 50–70); moderate (IQ 35– 49); severe (IQ 20– 34); profound (IQ below 20).
  • 46. • MILD INTELLECTUAL DISABILITY (IQ 50-70) • People with mild learning disability account for about 85% of those with learning disability. Usually their appearance is unremarkable and any sensory or motor deficits are slight. • Most people in this group develop more or less normal language abilities and social behaviour during the preschool years, and their learning disability may never be formally identified. • In adulthood, most people with mild learning disability can live independently in ordinary surroundings, although they may need help in parenting and coping with family responsibilities, housing, and employment, or when under unusual stress.
  • 47. • MODERATE INTELLECTUAL DISABILITY (IQ 35-49) • People in this group account for about 10% of those with learning disability. • Many have better receptive than expressive language skills, which is a potent cause of frustration and behaviour problems. Speech is usually relatively simple, and is often better understood by people who know the patient well. Many make use of simplified signing systems such as Makaton sign language. • Activities of daily living such as dressing, feeding, and attention to hygiene can be acquired over time, but other activities of daily living, such as the use of money and road sense, generally require support. Similarly, supported employment and residential provision are the rule.
  • 48. • SEVERE INTELLECTUAL DISABILITY (IQ 20-34) • It is difficult to estimate IQ accurately when the score is below 34 because of the difficulty in administering the tests in a valid manner to individuals in this group. Estimates suggest that people with severe learning disability account for about 3–4 % of the learning disabled. In the preschool years their development is usually greatly slowed. • Eventually many people can be helped to look after themselves under close supervision, and to communicate in a simple way—for example, by using objects of reference. • As adults they can undertake simple tasks and engage in limited social activities, but they need supervision and a clear structure to their lives.
  • 49. • PROFOUND INTELLECTUAL DISABILITY (IQ BELOW 20) • People in this group account for 1–2 % of those with intellectual disability. • Development across a range of domains tends to be around the level expected of a 12- month- old infant. • Accordingly, people with profound intellectual disability are a highly vulnerable group who require considerable support and supervision, even for simple activities of daily living.
  • 50.
  • 51. MANAGEMENT • Assessment of a person with suspected intellectual disability is directed towards five main areas: ● the cause and severity of the disability ● intellectual and social skills development ● associated medical conditions ● associated psychiatric disorders ● assessment of needs.
  • 52. • Full assessment involves several stages, including • history- taking, • examination of the mental state, • physical examination, • genetic and other laboratory investigations, • developmental testing, • functional behavioural assessment, • analysis of the interactions between the disabled person and the family and the social support systems, and other aspects of adjustment
  • 53. • History taking • Family history: Parents: ages; consanguinity; medical history; any previous pregnancies (including abortions, stillbirths). Wider family: any history of ID; specific cognitive impairments; congenital abnormalities; neurological or psychiatric disorders. • Gestational history: General maternal health and nutrition; maternal infections; exposure to medication, drug and alcohol use, toxins, radiation; chronic medical conditions; history of pre- eclampsia, abnormal intrauterine growth, or foetal movements. • Birth of child: Gestational age; whether multiple pregnancy (birth order); duration of labour; mode of delivery; any complications; any placental abnormalities. Examination of birth records (Apgar scores, weight, length, head circumference).
  • 54. • Neonatal history: respiratory distress, infections, hypoglycaemia, hyperbilirubinaemia, • Childhood history: Weight gain, growth pattern, feeding pattern, sleeping pattern, early developmental milestones. History of childhood illnesses (esp. CNS infections or seizures, metabolic/endocrine disorders) and accidents. • Results should be obtained from any prior developmental, psychological, and psychiatric evaluations • General systemic enquiry. • Detailed behavioral, social, and educational history, as well as a record of medications.
  • 55. • In addition to assessment of the patient, attention should also be focused on the patient’s living situation, relationships and current stressors, noting particularly any recent changes. • A high index of suspicion for abuse and neglect is needed • Sufficient time should be allocated for the evaluation. This should include an opportunity for the parents to communicate their concerns, perceptions, and misconceptions
  • 56. • Mental state examination • Detailed observation of behavior, including attention, impulsivity, activity, affect, motor mannerisms, disordered social communication, and internalizing (eg, anxiety, depression) and externalizing behaviors (eg, oppositional and aggressive behavior) • Many people with ID attend and concentrate poorly, so the interview should be carried out informally and questions should be simplified based on the child’s level of understanding.
  • 57. • Perception and thought disorders • Parent/family interactions and behaviors may be observed for any features suggesting parental depression, parenting characteristics, or suspicion of child abuse. • Parents may manifest features of genetically mediated disorders themselves, which would be relevant to their child's evaluation, diagnosis, and intervention.
  • 58. • Physical examination • A systematic physical examination should include noting the child’s overall appearance, looking for dysmorphic features and other physical signs suggestive of specific disorders. • Head circumference should be recorded. Neurological examination is important and should include particular attention to impairments of vision and hearing. • Assessment of the heart, lungs, abdomen, genitourinary system, back, extremities, and skin.
  • 59. • Laboratory and genetic investigation • Standard tests will include FBC, U&Es, LFTs, TFTs, glucose, infection screening (blood and urine), and serology (ToRCH—toxoplasmosis, rubella, cytomegalovirus, herpes simplex virus; HIV). • Where dysmorphic features are evident, or physical signs indicate, arrange X-rays of skull, vertebrae, chest, abdomen, hands, feet, and long bones; cardiac/abdominal ultrasound. • If metabolic disorder is suspected (e.g. progressive course), arrange screening tests of blood and urine. • Other more detailed investigations may include neurophysiological tests (EEG), neuroimaging (cranial ultrasound, CT/ MRI, functional imaging), (neuro)pathological examination (fibroblast culture; biopsies—muscle, skin, rectum).
  • 60. • As many cases of intellectual disability, especially moderate and severe forms, are caused by a specific chromosomal or genetic abnormality, genetic investigations are a major component of assessment • Karyotyping (G-banding, high resolution banding, fluorescence in situ hybridization—FISH) or other more specific genetic tests (e.g. FraX DNA testing). • A clinical geneticist can help with the interpretation of test results, and sharing the information with the family and addressing their questions. • Genetic investigations are also critical in preventative screening for intellectual disability
  • 61. • Developmental testing • This assessment is based on a combination of clinical experience and standardized methods of measuring intelligence, language, motor performance, and social skills. • Although the IQ is the best general index of intellectual development, it is not reliable in the very young or among people who have severe to profound degrees of intellectual disabilities. • There are norm- referenced tests such as the Wechsler Adult Intelligence Scale (WAIS) and other IQ measures, criterion- referenced tests that apply to particular skills without reference to population norms, tests of adaptive behaviour in social settings, and assessments of behavioural functioning.
  • 62. • Wechsler Intelligence Scale for Children (WISC-IV) and for adults (WAIS-IV). Gives a full scale IQ and measures cognitive functioning within four domains of verbal comprehension, perceptual reasoning, processing speed and working memory. The WISC-IV is validated for use between 6 – 16 years; the WAIS-IV for 16 – 90 years. • Standard Progressive Matrice (SPM) or Raven’s progressive matrices (RPM) nonverbally assesses intelligence in children and adults through abstract reasoning tasks.
  • 63. • Vineland Adaptive Behaviour Scale • The British Ability Scales and Differential Ability Scales • The Disability Assessment Scale • Autism Behaviour Checklist (ABC) • ABAS (Harrison and Oakland, 2000) • British (Peabody) Picture Vocabulary Test • Reynell Scales of Language • Life Experiences checklist
  • 64. • Functional behavioural assessment • The functional assessment of behaviour involves an assessment of events before, during, and immediately after the behaviour takes place. • It is based on observations reported by family, carers, and members of the clinical team. It is concerned with abilities related to self- care, and social abilities, including communication, sensory motor skills, and social relationships.
  • 65. • Assessment of social interaction • This assessment is concerned with the interaction between the person with intellectual disability and the individuals closely involved in their care. • It is also concerned with opportunities for learning new skills, making relationships, and achieving more choice. If the person with intellectual disability has reasonable language ability, it is usually possible to obtain much of the information from him or her. If language ability is less well developed, the account has to be obtained mainly from informants. • It is often appropriate to ask parents, teachers, or care staff to keep records of behaviours such as eating, sleeping, and general activity so that problems can be identified and quantified.
  • 66. • Assessment of needs • As the diagnostic assessment progresses, the likely needs of the patient require careful consideration, too, as these will form the basis of the care package and management plan to be implemented. • The needs assessment brings together the social, emotional, and health needs of the person, and takes into account their views and wishes as well as those of their significant others.
  • 67. • Follow up assessment • Once intellectual disability has been diagnosed, regular reviews are required. • For children, these are usually carried out by a multidisciplinary child health team together with teachers and social workers. The child psychiatrist liaises with the team, and has a particular role where the child has emotional, behavioural, or other psychiatric problems. • When the child reaches school- leaving age, a thorough review is important. This should assess the need for further education, the prospects for employment and independent living, and the need for ongoing specialist physical and psychological healthcare
  • 68. • The current predominant principle of care is normalization, an idea that was developed in Scandinavia in the 1960s. • The general approach to care is educational and psychosocial, together with appropriate psychiatric interventions for mental health problems. • The multidisciplinary team providing continuing health care benefits by including psychiatrists, psychologists, speech therapists, nurses, occupational therapists, and physiotherapists.
  • 69. • One aspect of the policy of normalization is that children with intellectual disability should be educated as far as possible within inclusive preschool settings and mainstream schools. The extent to which this is done varies in different countries • Research has consistently shown the improved cognitive and social outcomes for children with intellectual disability, if educational interventions are commenced early and, if possible, in inclusive play group or nursery classes • Education in an ordinary school offers the advantages of more normal social surroundings, social integration, and the expectation of progress, but it may have the disadvantage of a lack of special teaching skills and equipment.
  • 70. • Others need to attend special educational programmes for children with intellectual disabilities. It is still not certain which intellectually disabled children benefit from ordinary schooling. • It is now widely accepted that parents should be supported in caring for their intellectually disabled children at home. If care is too heavy a burden for the parents because of their other family commitments, the child with intellectual disability should, if possible, be placed in another family. • Adults should be supported in ordinary housing, or placed with a family, or in suitable lodgings, or in a small residential group home. Staff need to encourage the residents to develop their social skills and to live as normally as possible.
  • 71. • Medical treatment: people with intellectual disability should have the same access to general and specialist medical services as other citizens, but they require extra support if they are to obtain full benefit. • Families and carers are helped when care is coordinated by a single person, so that they do not receive conflicting advice • People with intellectual disability have increased health needs and it is therefore generally recommended that annual health checks be performed. This helps to screen for treatable conditions and improve their quality of life, as well as preventing early death.
  • 72. • Psychiatric treatment in some countries it is provided by generic mental health services, but in the UK it is generally provided by staff who specialize in the care of people with intellectual disability. • Psychiatric disorder in people with intellectual disability usually comes to notice through changes in behaviour. It should be remembered, however, that behavioural change can also result from physical illness or from stressful events, both of which should be carefully excluded. • In the most disabled, and especially those with sensory deficits, behavioural disturbance may be due to understimulation and frustration owing to the inability to communicate wishes and needs. • Once the cause is clear, the treatment follows
  • 73. • The indications for psychotropic drugs are generally the same as for patients of normal intelligence • However, the psychiatrist has particular responsibility for organizing effective ongoing monitoring, including regular physical examination especially important for patients with severe communication impairments who cannot describe adverse effects. • Also, neurologically impaired patients may develop adverse effects at lower doses and suffer from oversedation, delirium, and extrapyramidal symptoms.
  • 74. • Antipsychotic and benzodiazepine drugs are often useful in the short- term control of behaviour problems, generally at much lower doses than would be prescribed in the general population. • Antidepressants: SSRI preferred • Anxiolytics • Mood Stabilizers • Stimulants • Antiepileptic drug treatment is frequently required, given the prevalence of epilepsy in intellectual disability.
  • 75. • Some of the key psychological treatment currently used include behaviour therapy, cognitive behaviour therapy, psychodynamic psychotherapy, systemic family therapy, and a range of arts therapies • Cognitive therapies can be attempted with some patients with higher levels of verbal ability • Behavioural methods are helpful to people with severe intellectual disability as some of the methods do not require language. • May be used to help teach basic skills (e.g. feeding, dressing, toileting), establish normal behaviour patterns (e.g. sleep), or more complex skills (e.g. social skills, relaxation techniques, assertiveness training).
  • 76. • Behavioural techniques may also be used to alter maladaptive patterns of behaviour (e.g. inappropriate sexual behaviour, pica, phobias) • Often parents and teachers are taught to carry out the training so that it can be maintained in the patient’s everyday environment. • Modelling and prompting in the early stages of training in skills • Reward appropriate behaviour • Environmental modification to remove undesired triggers • Time-out (seclusion) for aggressive behaviours
  • 77. • Help for families: Having a child with intellectual disability can have a major emotional and practical impact on the family, and support is needed for the family from the time that the diagnosis is first made • They may need to hear the explanation several times before they can absorb all of its implications. Adequate time must be allowed to explain the prognosis, indicate what help can be provided, and discuss the part that the parents can play in helping their child to achieve his or her full potential. • In addition to practical assistance, the parents might need continuing psychological support
  • 78. Admission of people with ID • The degree of ID or the specific cognitive impairments requires a well-structured, predictable environment that cannot be provided elsewhere. • The degree of physical impairment requires more intensive specialist nursing or a safer environment where medical care is close at hand (e.g. severe treatment-resistant epilepsy). • The severity of behavioural problems prohibits management at home (e.g. abnormally aggressive or disinhibited behaviour which constitutes a serious risk of harm to the patient or to others). • The person requires treatment for a comorbid psychiatric disorder, which has failed to respond to initial treatment. • Respite placements to allow individuals and their families some relief from the intensity of long-term care.
  • 79. PREVENTION • Primary prevention consists of genetic counselling, the education of pregnant women (and the population in general) about behaviours that may put the fetus at risk, early detection of fetal abnormalities during pregnancy, and good obstetric and perinatal care. • Secondary prevention aims to prevent the progression of disability by either medical or psychological means (‘enriching’ education and early attempts to reduce behavioural problems) • Tertiary prevention helps to minimize the sequelae or consequent disabilities.
  • 80. • Least contentious among approaches to prevention are those that seek to avoid exposure to social and environmental risk factors for ID such as poverty, undernutrition, environmental toxins, infections, poor obstetric care, understimulating home environments, intrafamilial marriage, child abuse or low maternal education. • It has been estimated, for example, that reducing the proportion of children living in poverty who are exposed to environmental deprivation could decrease the prevalence of ID in the USA by approximately 10%
  • 81. OTHER ISSUES IN ID • Sex, relationships and parenthood: Most people with intellectual disability develop sexual interests in the same way as other people. Yet although people with intellectual disability are encouraged to live as normally as possible in other ways, sexual expression is usually discouraged by parents and carers, and sexual feelings may not even be discussed • In the past, sexual activity of people with intellectual disability was strongly discouraged because it was feared that they might produce disabled children or that they will not be good parents. • Social exclusion, bullying, and stigma are commonplace for children raised by intellectually disabled parents, and they are at high risk of being removed from parental care.
  • 82. • Maltreatment and abuse: There is a strong association between disability (physical and intellectual) and child maltreatment, and children are therefore significantly more likely to experience abuse than their non- disabled peers, more so if they have communication difficulties and behavioural disorder • There is no convincing evidence that sexual or physical abuse is more frequent in families with an intellectually disabled child. Instead, the sequelae of abuse are often found in people with intellectual disability who were brought up in an institution • There is also evidence to suggest that abuse is often underreported in disabled children.
  • 83. • This might be for a number of reasons, including o difficulty communicating, o perceived threat, o fears of being separated from family, o and tolerance of abuse to be accepted or receive rewards or affection. • When abuse has occurred, it may lead to psychological problems concurrently and later in life which are similar to those experienced by any other victim of such abuse
  • 84. • Growing old: Several problems arise more frequently as people with intellectual disability live longer, other than just the emergence of dementia and physical health problems • When the parents are the carers, they may find care increasingly burdensome as they grow old. Such parents are often concerned about the future of their child when they have died, yet can be reluctant to arrange alternative care while they are still alive. • The older person with intellectual disability also faces special challenges. If their parents die first, they face problems of bereavement and increased isolation.
  • 85. • These bereaved people should be helped to come to terms with the loss, using the principles that apply generally to grief counselling, but choosing appropriately simple forms of communication, such as life story work, memory boxes, using photographs, storytelling, art work, and films • Effects on the family: When a newborn child is found to be disabled, many parents can be distressed. • Frequently the diagnosis of intellectual disability is not made until after the first year of life, and the parents then have to change their hopes and expectations for the child.
  • 86. • They can experience prolonged depression, guilt, shame, or anger, and have difficulty in coping with the many practical and financial problems. • A few reject their children, some become overinvolved in their care, sacrificing other important aspects of family life, while others seek repeatedly for a cause to explain the intellectual disability. • Most families eventually achieve a satisfactory adjustment, although the temptation to overindulge the child can remain. However well they adjust psychologically, the parents might still be faced with the prospect of prolonged dependence, frustration, and social difficulties. If the child also has a physical disability, these difficulties can be increased.
  • 87. • Criminal justice system: People with mild intellectual disability have higher rates of criminal behaviour than the general population. • Some of the reasons include Impulsivity, suggestibility, vulnerability to exploitation, and desire to please are other reasons for involvement in crime, alongside an increased likelihood in being detected. Once apprehended, may be more likely to confess. • Of note, people with intellectual disability may be suggestible and may therefore give false confessions, so particular care should be taken when questioning them about an alleged offence. • The presence of an appropriate adult is important to ensure that the person with intellectual disability understands the situation and the questions.
  • 88. • They are also more likely to be the victims of crime and are perceived to be poor witnesses. • The criminal justice system in Nigeria
  • 89. • Normalization, autonomy and conflicts of interests: The policy of normalization can create conflicts between the interests of the intellectually disabled person and those of others • Normalization can also produce unintended effects. For example, it requires that intellectually disabled children should be educated in ordinary schools whenever possible. However, in secondary schools, children with special needs were found to be bullied three times more often than other children. • Other aspects o sexual activity, o contraception, o and parenting
  • 90. • Many people with severe intellectual disability are unable to give informed consent, and it is essential to be aware of local legislation and practice • If the patient is deemed to lack capacity, steps should be taken to help the person understand through assistive methods. The least restrictive option in keeping with the best interests of the intellectually disabled person should be pursued, usually through the involvement of a person closely involved in their care and who knows them well • Seriously ill patients who refuse potentially life- saving treatments can prove difficult to deal with in general medical settings.
  • 91. • Consent to research requires the ability to understand information, to use the information rationally, to appreciate the consequences of situations, and to decide between alternatives. • Any individual who has agreed to take part in research should understand that they can withdraw consent if they wish, a point that should be explained with particular care
  • 92. • In general, no research should be undertaken involving people who cannot consent, unless the same research cannot be successfully carried out without involving these people. • Some may be able to provide verbal rather than written consent. • Some may need sign language, pictures, or written information in simple language and a large font size. For some the proposal may have to be discussed repeatedly. It is also good practice to have agreement with the carers and the multidisciplinary team members.
  • 93. CONCLUSION • People with intellectual disability consist of a significant population in our society and their well-being should be of concern to any society. • Putting in place the right policies at different levels and advocacy for these policies could go a long way in improving their ability.
  • 94. REFERENCES • Harrison P, Cowen P, Burns T, Fazel M. Shorter Oxford Textbook of Psychiatry. 7th ed. 2018, Oxford University Press • Rutter’s Child and Adolescent Psychiatry, 5th Edition, Edited by M. Rutter, D. V. M. Bishop D. S. Pine, S. Scott, J. Stevenson, E. Taylor and A. Thapar © 2008 Blackwell Publishing Limited. ISBN: 978-1- 405-14549-7 • Semple D, Smyth R. Oxford Handbook of Psychiatry. 3rd ed. 2013, Oxford University Press
  • 95. • Kaplan & Sadock’s comprehensive textbook of psychiatry (10th Edition). Benjamin J Sadock; Virginia A Sadock; Pedro Ruiz. Wolterz Kluwer, (2017) • Elgujja, Abba & Arimoro, Augustine. (2019). Persons with Intellectual Disability and Access to Justice in Nigeria: Challenges and the Way Forward. • Walsh, W. bruce, and Nancy E. Betz. Tests and Assessment. 2nd ed. Englewood Cliffs, NJ: Prentice Hall, 1990.