The General Health
Management Aspects of
The Intellectually
Challenged Child.(ICC)
The General Health
Management Aspects of
Trisomy 21 Downs syndrome
P R O F. D O T T. E M M A N U E L U D E M E Z U E O N Y E K W E L U .
CSci,CSciTeach,ChirB(Hons),MB(Hons)MD,MRQA,FRSA,FCILED,FRGS,FRSH,FRCEM,FRSPH,FRSB,DSc/PhD(Hon)
1
Authors
Onyekwelu
Publication date
2019/4
Conference
Special Olympics Family
Health Forum Lions Club
International ,American
2
Corner Fajara The Gambia
West Africa
Volume
1
Issue
1
Pages
1-100
Publisher
3
Special Olympics Family
Health Forum Lions Club
International ,American
Corner Fajara The Gambia
West Africa
4
Definition:
• Although intellectual function
cannot be measured directly
however it could be deduced by
inference from the assessment of
skills in a number of different
executive and cognitive domains.
• The most reliable, rapid and
consistent indirect measure of
evaluating intellectual function is by
the Intelligence Quotient (IQ) test,
albeit the results are inconsistent
and are usually influenced by cultural
and environmental factors.
5
Definition of Intellectual Challenge by
the IQ Tests Standards
• For a long time, IQ tests have been
misappropriated and its interpretation
biased by the zeal to re- enforce social,
ethnic and cultural supremacy.
• However, it is axiomatic that the original
intent and purpose of IQ tests and still
their only valid use is in the
identification of children who would
benefit from additional assistance.
6
Definition of Intellectual Challenge
by the IQ Tests Standards
• The application of an IQ test to a
population produces the standard
bell-shaped normal distribution
curve.
• The mean is set at a score of 100
and 2 standard deviations below the
mean (which scores 70 on most
tests) is usually defined as the lower
limit of “normality”.
7
Definition of Intellectual Challenge by the IQ Tests Standards
• The highest IQ score ever recorded
• Ainan Celeste Cawley (IQ score: 263)
• William James Sidis (IQ score: 250-300)
• Terence Tao (IQ score: 225-230)
• Marilyn Vos Savant (IQ score: 228)
• Christopher Hirata (IQ score: 225)
•
•
•
•
•
•
•
Kim Ung-Yong (IQ score: 210)
Edith Stern (IQ score: 200+)
Christopher Michael Langan (IQ score: 190 – 210)
Garry Kasparov (IQ score: 194)
Philip Emeagwali (IQ score: 190)
Judit Polgar (IQ score: 170)
Albert Einstein (IQ score: 160 – 190)
8
• Stephen Hawking (IQ score: 160)
9
Definition of Intellectual Challenge by the IQ Tests Standards
• IQ is the numerical annotation of a
persons scores after undertaking one of
the several standardized tests to measure
the intelligence level of individuals.
• Originally, the intelligence quotient was
calculated as the ratio of mental age and
chronological age (IQ= MA/CA x 100,
where MA is mental age, CA is
chronological age).
• However, today, intelligence scores are
calibrated against values of actual
population scores. Here is a graph that
10
shows how people fare when they take an
IQ test:
11
Definition of Intellectual
Challenge by the IQ Tests
Standards
12
Definition of Intellectual Challenge by the IQ Tests Standards
• This is, as you can see, a bell-shaped curve. It
depicts that most measurements fall in the
middle, and fewer fall at points farther away from
the middle.
• This simply implies that most people’s IQ scores
fall in and around the average range, while
much less people score very low or very high.
• The general score of 95% of the population from
these tests ranges between 70 and 130. Since there
are quite a few different classifications, the
Stanford-Binet Scale of Human Intelligence is the
most commonly used one and we shall use that as a
reference.
• According to this scale, people who have a
score higher than 145 are considered geniuses.
13
Intelligence Quotients Assessments
• About the ISIQ - Children's Version n
• This Child IQ test is professionally
designed for children ages 6-16 years
old and takes about 40-60 minutes to
complete.
• A child does not have to complete
the entire IQ test in one sitting.
• You can use the results of the IQ test
to determine your child's natural
intellectual strengths.
14
Intelligence Quotient Testing
• When the child is about to be
given the Test , to take the full
test, it is appropriate to set
aside about one hour where you
will be in a quiet and
uninterrupted environment
15
Intelligence Quotient Testing
• The ISIQ - Children’s Version is intended as a test
that parents of young children and teenagers
could use for assessing their childrens verbal
intelligence.
• Scores obtained could be employed by parents to
improve their wards awareness,comprehension
and planning for educational and career options.
• The reports obtained could also be used by health
and educational professionals in assessments for
career planning, school placement and problem
diagnosis.
• Such as in when diagnosing ADHD, learning
difficulties and dyslexia, it is crucial to
exclude mental retardation.
16
Intelligence Quotient Testing
• Description and Design.The ISIQ - Children's Version is a 201item multiple choice measure of verbal intelligence designed for
children ages 6 to 16. The test items were written to measure a
range of ability from a mentally slow 6 year old to a bright 16
year old.
It has about 40 items for each of five of the content areas
measured: information, similarities, arithmetic, comprehension and
vocabulary. Similar to the Wechsler Intelligence Scale for Children,
3rd and 4th Editions (Verbal WISC III and WISC IV), the ISIQ Children's Version results are reliable and accurate. Indeed, the
reliabilities hold up very well across all ages from 6 through 16. For
example, the mean reliability of the section scores for 10 year olds
is 0.84. For the same five Wechsler III tests for 10 to 11 year olds
the mean is 0.81. The total reliability of the ISIQ test for 10 year
olds is 0.96, computed by the Kuder -Richardson 21 formula. For the
WISC III total it is 93. The Cronbach alpha reliability coefficients for
the ISIQ total verbal I.Q. for 14 year olds is
.97 while the same measure for 14 year olds on the WISC III
total verbal I.Q. is .95.
17
IQ Testing
• The Wechsler tests are highly regarded
and widely used by clinical
psychologists globally and were most
frequently chosen for comparative analysis.
• The author is very familiar with the
Wechsler tests, having administered
them in his clinical practice for
several years, He is familiar with test
design, having constructed clinical,
industrial and research tests for about
three decades.
18
IQ TESTING
• A multiple-choice format was chosen to permit Internet
administration and automatic, computer scoring. Each item has 5
options, four that are possible answers and one for "I don't Know".
• There is only one correct answer for each item. When a child
misses 5 items in a row, that section of the test is discontinued
and the next begun.
• Test-takers are urged to be serious and complete the entire
test carefully. Young children should be guided by an adult to
assure reliable and valid scores.
•
Scores do not vary substantially by gender, ethnic group or
nationality, suggesting that the test is relatively culture- free and
free of ethnic bias for English-speaking children with access to the
Internet.
I.Q. scores are calculated by the standard deviation formula with
a mean I.Q. set at 100 and standard deviation of 15.
• Certificate of intelligence quotient that can be printed for
personal use.
•
Scores are given in terms of both I.Q. and percentile levels for all
five sections and the total score. The printed Test Report provides a
description of verbal intelligence, reliability data and recommended
interpretation of scores.
19
IQ TESTING
• Norms:
• The test norms are periodically updated and are currently based on a
sample of over 100,000 children from around the world. As there are
no substantial differences in scores by gender, scores are based on
comparison of the test taker's scores with those of other children
the same age.
•
•
•
Value:
Determining if a child is gifted or has special needs can give parents
a valuable insight into their child's emotional, academic and social
development - this children's IQ test can be immensely helpful in
determining if your child has special needs or is eligible for higher
placement in school.
Research has shown that one of the first steps to raising a gifted
child is to have him or her take an IQ test along with other forms of
testing to determine his or her strengths, weaknesses and abilities.
In today's crowded educational environment, parents cannot rely
solely on their child's school to determine if their child is gifted or
would benefit from being placed in a special academic environment.
Parents should take the initiative as early as possible by having their
children take an intelligence test.
20
IQ TESTING
• In many school districts, the best way for a child to get a
quality education is to be admitted into the gifted classes or
attend a special magnet school. Unfortunately, these
programs often have limited enrollments so countless
parents compete for a few, coveted spots.
• Further, parents who are looking to get their children into
these programs often need to provide proof that their child
belongs in a special or gifted program.
For years IQ testing was often an expensive and timeconsuming process affordable by only the wealthiest of
parents. The process needed to be administered by a licensed
and trained child psychologist who charges A substantial
amount for a basic assessment. This is no longer the case. The
ISIQ - Children's Version is a valid and accurate assessment of
a child's intelligence quotient and just as accurate as the
Wechsler IQ tests for children. Several parents globally employ
the ISIQ - Children's Version to quickly and affordably
determine their child's level of intelligence.
21
IQ Testing
• A high IQ doesn’t necessarily indicate than a child is smart.
• Having a high IQ does not necessarily mean that the person is
intelligent or very smart. The problem with IQ tests is that
although they’re pretty good at assessing our deliberative skills
(which involve how we use our working memory and reason), but
they are not able to assess
our inclination to use them when the situation demands.
This is a very important difference. Intelligence is about
brain power whereas rational thinking is about control.
• Some people who are intellectually able do not bother to
engage very much in analytical thinking and are inclined to
rely on their intuitions. “Other people will check out their gut
feeling and reason it through and make sure they have a
justification for what they’re doing.
• A high IQ is like height in a basketball player. It is certainly a
crucial trait, provided all other ‘things’ are equal. But if all
other things aren’t equal, then the player needs a lot of more
than just height in order to be a good basketball player.
Similarly, there is a lot more to being a good thinker than
having a high IQ.
22
Definition of Intellectual Challenge by the IQ Tests Standards
• Having seen the list of the people
with the highest IQ in the world.
• It would be worthwhile to remark
that IQ tests are not necessarily all
that accurate in estimating
someone’s overall intelligence, even
if they are good markers for specific
cognitive skills, such as
mathematical ability and logical
reasoning.
23
The definition of intellectual Challenge
• The definition of Intellectual Challenge used by
the American Association of Mental Difficulty
• (AAMD) reflects these issues:
• Significantly Subaverage General
Intellectual Functioning,
• Existing concurrently with Deficits in Adaptive
Behaviour &
• Manifested during the Developmental Period.
• Intellectual Challenge is further subdivided
by the World Health Organisation into:
• Mild (IQ 50-70)
• Moderate (IQ 35-49) &
• Profound (IQ below 20) categories.
24
The definition of intellectual
Challenge by the
Intelligence
Quotient(IQ
Tests)
• Significantly Subaverage General
Intellectual Functioning is usually
interpreted to imply more than two
standard deviations below the mean IQ.
• Existing concurrently with Deficits in
Adaptive Behaviour reflects the limitations
of IQ testing and the need to take into
account how a person functions in everyday
life.
25
• Manifested during the developmental
period excludes disabilities that result
from cerebral insults occurring in adult life.
26
Prevalence of intellectual disability
• Prevalence estimates for intellectual disabilities
vary from 1 -7% with most figures being in the
range of 1.5-3%.
• This discrepancy in the range figures is due
to differences in the
• Definition of Intellectual Disability,
• Differences in Methodology &
• True differences in Prevalence.
• Some studies use 75 rather than 70 as the
lower limit of normal.
27
• Examination of the normal distribution curve
illustrates that this variation will dramatically
increase the number of children included
28
Prevalence of intellectual Challenge.
• Case detection could be achieved by:
• [I]-Notification.
• [II]-Registration of children enrolled
for a service
• (both of which are likely to
underestimate true prevalence)
29
Prevalence of intellectual Challenge.
• Case detection could be by field
based total population screening
using IQ test.
• Although the later method is most
reliable, but given the immense
financial, practical and ethical
30
considerations, it is often not
employed.
31
Prevalence of intellectual Challenge.
• Prevalence estimates often indicate
higher rates for school-age children
than for older or younger children .
• This fact is more likely to reflect
difficulties of detection rather than
true variation
32
Prevalence of intellectual Challenge.
• Children with intellectual
difficulties are more likely to
present with problems at school than
as preschoolers or school leavers.
• This fact is buttressed by an English
Language study amongst children
aged 5 to 14 years where a
prevalence figure of 0.34 and 2.53
was computed for IQ levels between
0-49 and 50-70 respectively.
33
Prevalence of intellectual Challenge
• In a closely related endevour, two
Scandinavian studies proffered
concordance figures .
• In the first Scandinavian study, the
sample population involved students
aged between 8 to 12 where
prevalence figures of:
• 0.3 ----------------- IQ ranges of 0-49
• and
• 0.37----------------IQ ranges of
50-70
34
Prevalence of Intellectual
Challenge.
• In the second Scandinavian study
amongst 14 year old aged prevalence
figures of 0.63 and 0.56 were
deduced for IQs ranges 0-49 and 50 70 respectively.
• Also furthermore, a North American
Study employing children aged
between 7-10 computed a prevalence
figure of 0.32 for children in the IQ
range of 0-49.
35
Aetiology of intellectual Challenge
• Early discussion on causation focused on
the organic versus non-organic
aspects and on the effects of
environmental factors.
• Some children may be classified as
intellectually disabled simply because they
fall, naturally, at the lower end of the
normal distribution curve.
36
Aetiology of intellectual Challenge
• Whilst others are intellectually
disabled as a result of malformation,
organic injury.
OR
• Social environmental factors are
normally associated with mild
intellectual disability although they
may be a contributing factor in more
severely affected children.
37
Aetiology of intellectual Challenge
A specific organic cause could be found in:
70-90% of children with moderate and severe
intellectual disability.
The importance of determining the aetiology
has been highlighted by several authors
because it provides a basis for accurate:
[I]-Genetic counselling.
[II]-Prediction of outcome.
[III]-Preventive strategies and
38
[IV]-Parental support.
39
Aetiology of intellectual Challenge
• It is always helpful to grieving families to
comprehend why their child is disabled.
• Several epidemiological studies,
emanating from the Scandinavia:
• Demonstrated that the aetiology is most
certain for the severely to the profoundly
intellectually impaired children
• Compared to :
• The mildly to moderately severely
affected children
40
Aetiology of intellectual Challenge
• In this study involving the very severely
and profoundly affected cases of
intellectual difficulties in childhood:
• Prenatal factors implicated—55%
Whereas in the same magnitude of cases
in the moderate to the moderately
severely affected the causal mechanisms
were largely
• Idiopathic---------------55%
41
Aetiology of intellectual Challenge
• In the severely to the profoundly affected
subsets:
• Idiopathic factors-------
18%
• Perinatal factors -------15%
•&
• Postnatal factors ------11%
• contributed this% of cases in this range.
42
Aetiology of Intellectual Challenge
• As for the moderately and the
moderately severely affected of
cases in this IQ range category:
• Prenatal------------------------------- 23%
• Perinatal------------------------------ 18%
and
43
• Postnatal causes------------------- 4%
44
Aetiology of intellectual Challenge
• The same range of factors are
implicated in the aetiology of milder
forms of intellectual difficulties.
• Although the proportions in which a
specific cause could be identified is
much more diminutive.
45
Examples of Possible causes of
Intellectual Challenge.
• Prenatal Factors associated with
intellectual disabilities could be
• [A]-Chromosomal abnormalities
• such as but not limited to:
• [i]-Downs Syndrome
• [ii]-Trisomy 18
• [iii]-Cri du Chat syndromes.
• [iv]-Sex chromosome abnormalities.
46
Examples of Possible causes of
Intellectual Challenge.
• [B]-Genetic such as but not only
• [i]-Fragile-X-syndrome.
• [ii]-Tuberous Sclerosis.
• [iii]-Neurofibromatosis.
• [iv]-Metabolic & storage disorders.
• [C]-Dysmorphic syndromes
• [D]-Prenatal Infections.
• [E]-Teratogens such as Drugs and Toxins.
47
Examples
of
of
Possible
causes
Intellectual
Disability.
• Perinatal Factors associated with
intellectual disabilities include but not
limited to:
• [A]-Perinatal hypoxia and
• [B]- Asphyxia
• [C]- Trauma
• [D]-Infections
48
• [E]-Biochemical abnormalities.
49
Examples
of
of
Possible
Intellectual
causes
Challenge.
• Postnatal Factors implicated in
intellectual Challenge include
but are not limited to:
• [A]-Trauma
• [B]-Hypoxia
• [C]-Meningitis
• [D]-Encephalitis
50
• [E]-Poisons.
51
Diagnosis of Intellectual Challenge:
• With regards to the diagnosis of
intellectual disability, there are
two major tasks:
• [I]-To establish that an intellectual
disability is present,
and
• [II]-To identify the cause of the
intellectual disability.
52
Diagnosis of Intellectual Challenge:
• Does the child have an intellectual
Disability? If yes
• Children with intellectual
disabilities may present in the following
four ways:
• [A]-In the neonatal period with
recognizable malformations which are
usually associated with intellectual
disability (such as Downs syndrome)
53
• [B]-With developmental delay. The
more severe the delay the earlier these
children are likely to present.
54
Diagnosis of Intellectual
Challenge
• [C]-As a result of surveillance of
infants at increased risk of
developmental problems( such as
infants with a very low birth weight)
• [D]-With feeding or behavioural
problems which on investigation are
55
found to be associated with
intellectual disability.
56
Diagnosis of Intellectual Challenge:
• The diagnosis of the presence of Intellectual
Challenge relies on a high index of suspicion
followed by comparison of the child’s
performance with age appropriate norms.
• Retrospective collections of developmental
milestones are seldom useful, but
• Milestones recorded at the time (often in
infant welfare books) &
• Comparisons with siblings at similar ages
are valuable.
57
Diagnosis of Intellectual Challenge
• These tests are useful in that they
compare the child’s development with a
population of normal children at the same
age &
• They examine all aspects of development.
• Their limitations are that they are
not precise &
• They are of limited value once a
specific disability has been identified.
• They are no more than a screening test.
58
Once a disability is suspected more
detailed & specific testing &
investigation is required.
59
Aetiological Diagnosis of Intellectual
Challenge in Childhood-(ICC)
• The History should include:
• A Family Pedigree,
• Details of The Pregnancy,
• Birth &Neonatal History
• Birth Weight,
• Length & Head Circumference
• Early Feeding Habits.
• Psychomotor Development &
• Specific Illnesses(Icterus etc)
60
Aetiological Diagnosis of Intellectual
Challenge in Childhood-(ICC)
• The examination should record
growth especially:
• Head circumference.
• In a child with microcephaly,
• Serial head circumference
measurements may indicate the
stage in the child’s life when the
cerebral insult occurred.
61
Aetiological Diagnosis: In Intellectual Challenge
of Childhood.-ICC.
• The child’s general responsiveness,
• the presence of dysmorphic features &
• Any abnormalities of skin
pigmentations should be noted.
• Full neurological examination should
include assessment of vision& hearing.
• If there is a significant developmental
delay it may be preferable to obtain
specialist assessment of these functions.
62
Aetiological Diagnosis: In Intellectual Challenge of Childhood--ICC.
• General physical examination should
particularly include a search for other
congenital abnormalities.
The history & examination will often
lead to a specific aetiological
diagnosis or at least limit the range of
possibilities.
• Evaluations for most children with
idiopathic moderate or severe
63
intellectual disability warrant a
chromosome analysis.
64
Aetiological Diagnosis for Children with
Intellectual Challenge.
• Chromosomal
analysis&cytogenetics
studies(which should include examination
for fragile-X-syndrome and computed
tomography.
• (CT) and screening tests on the urine
for metabolic abnormalities.
65
• Given the opportunity and availability all
newborns infants are routinely tested for
Phenylketonuria and hypothyroidism
66
Aetiological Diagnosis for Children with Intellectual Challenge.
• In specific instances:
• Serology for Congenital Infections Tests
of Thyroid Functions
• Urinalysis for Mucopolysaccaridosis
• Serum Creatinine Phosphokinase
• A maternal Guthrie Test For
maternal Phenylketonuria &
• Other specific tests for rare disorders
will need to be considered.
67
Differential Diagnosis of Intellectual Challenge:
• The most common differential diagnosis is
• Delayed development in a normal child. •
It is helpful to note :
• The quality of the child’s responses.
• The recent developmental progress.
• Any adverse environmental factors.
• This dilemma may only be resolved by
monitoring a child’s development over a
68
period of time.
69
Aetiological Diagnosis for Children with Intellectual Challenge.
• If delays are attributed to: environmental
factors.
• The quality of the environmental
changes should be monitored &
• Organic factors excluded.
Other developmental disabilities:
Impairments of Vision OR Hearing &
• Motor Development may present as
Global Developmental Delay and should
be excluded.
70
Differential Diagnosis of Intellectual Challenge in Childhood-ICC.
• Disorders associated with ongoing disease
and deteriorating function such as
muscular dystrophy.
• The Mucopolysaccaridosis
storage disorders &
• The neurodegenerative disorders.
• Hypothyroidism.
• Craniopharyngioma &
• The neurodegenerative disorders.
• May all present with delayed development.
• These conditions warrant considerations
in any child who presents after a period of
71
normal development or who has lost
developmental skills.
72
Some Specific Considerations such as Downs syndrome
• Downs syndrome is the most common
abnormality associated with intellectual
disability
•&
• Accounts for approximately 25%
of children with an IQ less than 50.
• The incidence is approximately
1:1000 births.
• This is lower than in the past because of
the reduced number of older women
having babies and the availability of
intrauterine diagnosis.
73
Some Specific Considerations such as Downs syndrome
• The extra chromosome in Downs
syndrome may be of maternal or
paternal origin.
• In approximately one-third of the
cases, it could be traced to the
father and in two- thirds of cases
it could be traced to the mother.
• Approximately 95% of children with
Down syndrome have standard
Trisomy 21; the remainder has
additional chromosome 21 material
as translocation –D/G or G/G – or
Trisomy/normal mosaism .
74
Some Specific Considerations such as Downs syndrome
• The incidence of Downs’s syndrome
increases with increasing maternal age,
rising to about one-1% over the age of forty
years.
• Despite the higher incidence of Downs’s
syndrome in older women, the vast
majority of mothers of children born with
Downs’s syndrome are aged between 20 –
30 years of age.
• The spectrum of intellectual disability in
Downs’s syndrome varies from mild to profound
with most performances being in the moderate
and severely disabled range.
75
Some Specific Considerations such as Downs
syndrome
•With active early
educating
programmes some
children with
Trisomy 21 are
functioning at or
above-age
appropriate levels
76
Some Specific Considerations such as Downs syndrome
• Despite this it is likely that the majority
of children born with Downs’s syndrome
will have a significant intellectual
disability.
• Children with Downs’s syndrome have
an increased susceptibility to infections.
• Congenital heart disease occurs in about
sixty percent of infants-one-third of whom
have an artrioventricular canal and onethird a ventricular septa defect.
77
• Conductive deafness occurs in 60- 80%,
and many may benefit from hearing aids
in early life.
78
Some Specific Considerations such as Downs
syndrome
• Visual impairments.
• Hypothyrodism due to autoimmune
thyroiditis &
• ?Duodenal atresia are common
• ?Haematological abnormalities including
Leukaemias are approximately twenty
times more common in Downs syndrome
than in the general population.
79
Some Specific Considerations such as
Downs
syndrome
• Estimates of mean life expectancy
at birth vary between 30 to 45
years.
• Children who survive The infectious &
• The cardiac hazards of infancy could
be expected to live longer than this.
80
Fragile-X -Syndrome An Archetype of a
common cause of Intellectual Challenge
which could present covertly.
• Fragile-X -Syndrome is the second
most common cause of intellectual
disability (after Downs syndrome).
• It occurs in about 2-10 per 10,000 males .
• Intellectual disability may be
mild, moderate or severe .
• In most cases there are craniofacial
characteristics (prominent forehead, large
jaw and prominent ears) and
orchidomegaly.
81
Fragile-X -Syndrome An Archetype of a
common cause of Intellectual Challenge
which could present covertly.
• Chromosome analysis using
a special culture medium,
reveals a fragile site in the
long arm of the X
chromosome.
82
Fragile-X- Syndrome An Archetype of a
common cause of Intellectual Challenge
which could present covertly.
• Fragile-X-Syndrome:
• The disorder is inherited as an
X-linked recessive condition.
• In most but not all carrier
females, the fragile site could
be demonstrated and up to 35%
have a mild intellectual
disability.
83
common cause of Intellectual Challenge which could present covertly.
• The chromosome abnormality is
not always apparent in carrier
females
and a few females inherit
the abnormality from asymptomatic
fathers with the abnormal X
chromosome.
• In some cases there is the typical
family history with or without the
physical characteristics, but no
chromosome abnormality.
84
Autism:
• Autism is a developmental disability
in which the principle impairments
are in social communication.
• The prevalence is 2-4 per
• 10000 and it is 2-4 times more
common in males than in females.
• The diagnosis is made when there
are characteristics abnormalities in
each of the following areas.
85
Autism:
• [1]-Language delay:
• Autistic children have got a
minimal use of speech and
echolalia.
• [2]-Restricted Social
Interactions:
• Autistic children usually have
compromised and poor eye
86
contact, aloneness, aloofness,
difficulties in relating to peers.
87
Duchenne
muscular
dystrophy:
• About 10-15% of male children with
muscular dystrophy have an
intellectual disability which may
cloud the clinical presentation.
• A serum creatinine phosphokinase
estimation should be considered in
88
all boys not walking by eighteen
months.
89
Neurofibromatosis and
Tuberous Sclerosis:
• Both conditions are caused by
autosomal dominant genes.
• They vary considerably in severity,
have dermatological manifestations
and may be associated with
intellectual challenge
90
Dysmorphic syndromes:
• There are a large number of
rare, sporadic conditions in
which characteristics patterns
of malformations are usually
associated with intellectual
challenge.
• The commoner of these are
Cornelia de Lange syndrome;
Prader-Willi syndrome and
Soto’s syndrome.
91
The Effects of Intellectual Challenge:
• Children who have intellectual disabilities
share with all children a potential for
growth and development, individual
aspirations and susceptibility to
environmental factors.
• They need even more nurturing, tolerance
and education from their parents,
caregivers and society than their nondisabled peers.
• Their intellectual impairments manifest as
delays in psychomotor development,
92
behavioural difficulties or immense
challenges with education.
93
The Effects of Intellectual Challenge:
• Intellectual disability is associated with
developmental delays, difficulties in
acquiring new skills, communication
impairments and social adjustment
problems.
• Children with mild intellectual disability
often do not present until school age when
they have major problems with learning to
read and write and difficulties with social
and interpersonal skills.
• As adults they can be expected to be
capable of living independently and
maintaining a job in open employment
94
.Difficulties
with
reading,
writing,
handling
money
and
interpersonal
relationships are likely to persist.
95
• They could be expected to have greater
difficulties with
• Educational learning &
• May require specific teaching to:
• Master basic social skills such as:
• Dressing
• Feeding
• Cooking
• Using public transport &
• Living independently.
As adults they will be capable of :
Productive employment &
Independent living
96
Although some ongoing support is likely to be
needed.
97
The Effects of Intellectual Disability:
Children with severe and profound
intellectual disabilities will often have
little or no speech
They may require considerable
assistance with dressing and feeding.
They are capable of mastering new
skills but their progress will be very
slow.
98
The Effects of Intellectual Disability:
• Approximately two-thirds of all children
with intellectual disabilities have
additional impairment of vision, hearing or
motor function.
• Epilepsy is common and occasionally
could be recalcitrant or Intractable.
• For all these children family stress,
limited education, social rejection and
99
sensory deficits may result in additional
secondary disabilities.
100
The Effects of Intellectual Difficulties
For the Family:
• For the Family:
• The realization that their child
has a disability is a major grief
stress.
• Amongst the common
manifestations of their grief are
guilt and denial.
These are often manifested
by seeking multiple opinions
and unorthodox treatments.
101
For the Family:
• Anger is common and is often directed
at doctors and hospitals.
• Occasionally there may be rejection of
the child.
• Parents have to come to terms with
their grief whilst simultaneously
coping with a difficult child.
102
The Effects of Intellectual Difficulties
For the Family:
• Friends, relatives, doctors and
other professionals are not
always sensitive to their needs
and coping with this is an
additional burden.
• Many families will be forced to
change their lifestyle and
career plans.
103
The Effects of Intellectual Difficulties
For the Family:
• Usually, mothers are expected to
carry the major caring burden and
find it difficult to pursue a career and
at the same time care for a child with
an intellectual disability.
104
The Effects of Intellectual Difficulty For the
wider community:
• For the wider community:
• IC at a prevalence rate of 1-3%
and a move away from segregated services
implies that most people will have some
contact with a person with an intellectual
disability at the community level.
• Consumer pressure and public conscience
increasingly demand tolerance, acceptance
and material contributions from all sections
of the community.
105
The Effects of Intellectual Difficulty
For the wider community:
• Human services such as:
• child care.
• Kindergartens.
• Schools.
• Transport.
• Libraries &
• Recreation facilities
• If established for children and
families are expected to adapt
to meet the needs of people
with intellectual disabilities.
106
Management:
• Family Support:
• Parents need to be told that their child
has an intellectual disability
• Openly
• Accurately &
• Sensitively.
• Where doubt exists this should
be discussed &
• where appropriate, a 2nd opinion sought.
• Often parents seek a 2nd opinion & this
should be supported.
• Stressful information should be given
with both parents present.
107
• Written material should be provided &
the information repeated at follow-up
meetings with the family.
108
Management.
• Many parents find it helpful to talk
with other families, who have a
disabled child and there should be parent
to parent programmes to facilitate this.
• Later on:
• Drop-in centres
• Toy libraries
• Disability support
• Advocacy groups &
• Respite care will be used.
• Programmes should aim to facilitate
interaction between families who
have a disabled child &other families
in the community to provide further
support.
109
Management.
• Income support, assistance with health
care costs and subsidized home support
will be available to many families. In
some circumstance, most families who
have a child with a significant intellectual
disability are eligible for the child
disability allowance.
• Transport subsidies, in-home assistance,
free or heavily subsidized orthotic
equipment, wheelchairs and special seating are
also available.
110
Children’s Services:
• The pattern of services provision in
children with intellectual
disabilities is changing.
• Increasingly play groups,
kindergartens and schools which
encourage integration of children
with intellectual disabilities with
non-disabled children are replacing
segregated facilities.
• Integration is based on philosophies
of human rights and normalization.
111
Children’s Services:
• Normalization
evolved
in
the
Scandinavia in the 1960s.
• It stresses individual
• Dignity
• Choice &
• The value of the same everyday
activities & routines for
• Disabled people as are experienced
by non-disabled people.
112
Children’s Services:
• Segregated services which offer
more specialized interventions, amore
tolerant environment and higher staff
ratios are still seen as more appropriate
for some selected groups of children.
Few data based principles are
available to guide families in the
selection of appropriate services.
• It is helpful to look at the
philosophies and professional
standards of the service.
113
Children’s Services:
• In general, services which:
• [a]- are sufficiently flexible to
respond to the child and
family’s needs
• [b]-acknowledge the value of normal
life experiences, the importance of
the family and interaction with non disabled children
114
• [c]-establish management aims and
monitor progress, are the most
likely to be helpful.
115
Residential Care in Respite Homes
• Many families will benefit from shortterm residential care
Some family will need long-term
residential care for their children.
• If parents feel that they cannot care for
their child at home it is seldom effective
116
or helpful to attempt to persuade them
otherwise.
117
Residential Care in Respite Homes
• Parents should be assisted to find
the option that best suits their
needs.
• Foster care (both short& long term)
• Adoption
• Small community based
residential houses
• Nursing homes &
• Larger residential units
• May be available to meet
these needs.
118
The doctors (physician’s role)
• The doctors (physician’s role)
• Many professionals, including teachers, therapists,
social workers and psychologists have useful
contributions to make to children with intellectual
disabilities.
• Doctors, who are usually the pivotal figures in the
early diagnostic phases, should be well informed
about child and family services so that they can
properly advice families.
• They will need to be aware of associated
conditions such as epilepsy, sensory deficits and
cardiac anomalies and ensure that they are
detected early.
119
The Specialized Roles of The Clinicians
• As the child grows older:
• The doctor’s role will be less pivotal & central
• But rather becomes more peripheral.
• However, there still will be a need to treat:
• Associated conditions• Intercurrent illnesses• Provide information- &
• Advice to families.
• The Clinician may also be asked to assist the child &
• Family as an advocate for appropriate services.
120
Prevention of Intellectual Difficulties
• Prevention:
• The cornerstone of prevention is
• Accurate understanding of the causes of
intellectual disability in the community.
• Without this data
• Prevention planning must be based on
assumptions drawn from studies on
populations that may or may not be similar.
• Thus Monitoring the Efficacy of
Prevention Strategies will be difficult.
• Detection of Families at High Risk of
Genetic Abnormalities.
• Followed by Genetic Counselling &
121
• Intrauterine Diagnosis will prevent a small
number
of cases.
122
Prevention of Intellectual Difficulties
• However, it must be appreciated that the
majority of infants with genetic
abnormalities,
• Are born of families who were
not considered to be at high risk.
• Measures to reduce Alcohol &
Cigarette consumption are likely to
reduce mild intellectual disability.
• Further Research &Continued Monitoring of
Birth Defects &Potential Environmental
Teratogens are needed to identify new &
unknown cases.
123
Prevention of Intellectual Difficulties.
• Immunisation programmes, particularly those
against measles and rubella will reduce cases
due to these agents.
• Improvements in antenatal and neonatal care and
measures to ensure that these services are
accessible to all sections of the community are
likely to have a small effect.
• Further reductions in this area must await
research leading to the prevention of prematurity.
• Neonatal screening for treatable conditions is
already preventing most cases of intellectual
disability due to Phenylketonuria and
hypothyroidism.
124
Prevention of Intellectual Difficulties.
• Traffic management.
• Bicycle helmets.
• Seat restraints.
• Drink-driving legislation.
• Swimming Pool Safety Regulations &
Measures to reduce child abuse
• Will reduce Intellectual Difficulties due
to Acute Traumatic Brain Injury.
• Continued Improvements in
• Community Education &
• Standards of Living are likely to
be associated with a Reduction in
• Incidence, particularly of Mild
Intellectual Disability.
125
Prevention:
• Often parents of children with
intellectual disabilities suffer
unnecessary hardships as a
result of unduly and unguided
inappropriate reassurance.
126
Routine Medical Check up for
ICC such as Trisomy 21.
• Like all children IC children besides the
routine immunization and infant and child
welfare clinics which could be
differentially modified for them.
127
• ICC Should have routine interval
general and specific multidisciplinary
specialty focused medical check ups.
128
Routine Medical Check up for ICC such as
Trisomy 21.(Indepth Historical
Interview of Parents and Older Child.
• Child and Parents Complaint
• Focused tissues ,Organs Systems
Systematic Inquiry
• Inspection of :
• Childs Immunisation &
• Childs Welfare Cards.
• Developmental Diaries.
129
130