Intellectual Disability

INTELLECTUAL DISABILITY
In Australia the definition of Intellectual disability is taken from two main
sources. The first is from the American Association on Mental Retardation
(AAMR). In this definition, three traits are recognised as factors of Intellectual
disability: 1) Low intellectual functioning as measured by the Intelligence
Quotient; 2) Difficulties with adaptive skills, and 3) Conditions manifesting
before the age of 18 years of age.
The second source for the definition of Intellectual disability is from the
International Classification of Impairments, Disabilities and Handicaps
(ICIDH), which is similar to the AAMR. It however, considers social aspects
more thoroughly and covers the person’s ‘participation.’ That is, how their
disability affects their interaction with the environment.
Adaptive skills are those skills that everybody needs to function in the
community, for example: showering and dressing, shopping, cooking and
cleaning, communication with others in society, leisure activities, reading,
writing and mathematical skills, taking measures to ensure personal safety
within the community, understanding of health issues and perhaps also the
ability to work.
A person with Intellectual disability may not function adequately in many of the
areas of adaptive skills.
Cause:
Intellectual disability has many known causes.
The two main genetic causes of Intellectual disability are: “Down Syndrome”
and “Fragile X Syndrome”. Prader- Willi syndrome is a more rare genetic
cause.
During pregnancy: alcohol abuse - particularly the first and third trimester;
Taking drugs that are not prescribed, and infections such as Rubella.
Metabolic disorders such as Phenylketonuria (PKU).
Lack of oxygen during birth or from accidents such as near drowning.
Malnutrition, poverty and cultural deprivation.
Whooping cough, Chicken Pox, Measles, Reye’s Syndrome and other
diseases can cause intellectual disability.
Environmental toxins such as lead and mercury poisoning.
Shaken Baby Syndrome.
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Prevalence:
Intellectual disability occurs in people of all races.
In 1993 the Australian Bureau of Statistics recorded the prevalence of
‘Intellectual disability’ including all relevant disabling conditions and disorders
as 1.86%.
In 1997 the Australian Institute of Health and Welfare (AIHW) reported there is
a higher prevalence of Intellectual disability among males than among
females.
Many people with Intellectual disability in Australia have other conditions. In
the report from the AIHW it was noted that 44% of people reporting intellectual
disability as the primary disabling condition also reported associated physical
impairments or disabilities. Over 25% reported speech problems and 22%
reported associated psychiatric disabilities.
AIHW also reports the majority of people (86.6%) have their primary disabling
condition before the age of 18, whereas only 38.3% have the onset of their
condition at birth or during their infancy.
Outline of causes of Intellectual disability:
Down Syndrome:
Children with Down syndrome have an extra chromosome than other people;
it is attached to the 21 st chromosome.
Physical, intellectual and language and movement development is usually
slower than in other children without Down syndrome.
There are a lot of other problems associated with Down syndrome. Hearing
and eye deficits, instability of joints, congenital heart disease, Alzheimer’s
disease, and sleep disorders can also occur with Down syndrome.
Fragile X Syndrome:
In Fragile X syndrome the DNA sequence of the X chromosome does not
develop in the typical sequence. Males are usually more severely affected by
the syndrome, because they only have one X-chromosome. Females tend to
be less severely affected because the second X chromosome can partially
compensate for the other X chromosome.
Communication (language and eye contact) and cognitive skills are usually
most affected. Children can also become overstimulated and can easily over
react to changes in routine, environment and expectation.
Autism:
Autism symptoms usually appear by about three years of age. Boys are about
four times more affected than girls. Intellectual disability is commonly
associated with autism, however poor social skills are a large part of autism.
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Social impairments include: Lack of eye contact, aloofness, retreating into
their own world and having little awareness of others feelings.
Children with autism tend to speak later than other children. They are
sometimes unable to start and maintain a conversation. Tone and rhythm of
speech may be abnormal and they may repeat words or phrases.
Children with autism can be hyperactive; they can also have repetitive
movements (such as rocking or hand waving) however these movements can
at times be part of self-injurious behaviour.
Children with autism can also be upset by a change in routine or ritual. An
example of change in ritual: a child may have arranged the textas in colour
order and may become upset if this order is changed.
Phenylketonuria (PKU):
Phenylketonuria is an inherited metabolic disease whereby the phenylalanine
in the blood cannot be metabolised. This hinders children’s development
leading to intellectual, behavioural and neurological problems. The treatment
for PKU is a low protein diet consisting of foods that have little or no
phenylalanine.
Prader-Willi syndrome:
Prader-Willi is a genetic syndrome, in which a defect to the 15 th chromosome
is thought to occur during conception. Intellectual disability, short stature,
incomplete sexual development and the urge to eat constantly are part of
Prader-Willi syndrome. The latter is due to a flaw in the brain that makes the
person feel constantly hungry.
Shaken Baby syndrome:
Shaking a baby or infant (which is a serious criminal offence), causes brain
damage. Intellectual/learning disability occurs due to the brain damage,
hearing loss and vision loss or blindness can also occur, plus paralysis or
seizures.
Poverty and Cultural deprivation:
Children from socio-economically poor families can acquire intellectual
disability through poor nutrition, or not being able to access medical care.
Deprivation of cultural stimulation and learning experiences can cause
irreversible intellectual disability due to severe under-stimulation.
Some behavioural/emotional effects of Intellectual Disability:
The American Academy of Child and Adolescent Psychiatry state that “ Most
children with mental retardation (intellectual disability) recognise that they are
behind others of their own age. Some may become frustrated, withdrawn or
anxious, or act “bad” to get the attention of other youngsters and adults.
…[They also] may become depressed.”
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Expressing physical affection may also be done in a manner that is not
appropriate to the context.
If sexual education has not been provided or has not been understood, the
person with an intellectual disability may display inappropriate sexual
behaviours. They may also be at risk of unwanted sexual advances, as they
may not be aware of their right to refuse to be touched in any manner at any
time.
The term mental age:
Mental age refers to the score someone has achieved with respect to
standard intelligence testing.
Referring to a person with an intellectual disability as having the “mind of a
younger person” is an incorrect use of the term, because mental age only
refers to the score in the Intelligence Quotient test. It is important to remember
that the person has experiences that will contribute to how they relate to
others and their environment. They may also function in the community
differently than a younger person without intellectual disability who is in the
same age category as defined by the Intelligence Quotient test.
It is therefore important not to relate to the person with an intellectual disability
as a child, because their skills and experiences are likely to make them relate
differently than you may anticipate.
References:
The information provided has been adapted from the following sources:
American Academy of Child and Adolescent Psychiatry. 2003.
The Child With Autism.
Available online: http://www.aacap.org
American Academy of Child and Adolescent Psychiatry. 2003.
Children who are Mentally Retarded.
Available online: http://www.aacap.org
American Academy of Pediatrics.
Policy Statement: Sexuality Education of Children and Adolescents With
Developmental Disabilities (RE9603).
Available online: http://www.aap.org
American Medical Association, 2002.
Journal of the American Medical Association, Vol 288. no.12, September 25
2002.
Available online: http://www.ama-assn.org
Australian Institute of Health and Welfare (1997)
Media Release: Almost 1% of Australians with an Intellectual Disability.
Available online: http://www.aihw.gov.au
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Australian Institute of Health and Welfare (1997)
The Definition and Prevalence of Intellectual Disability in Australia.
Available online: http://www.aihw.gov.au
The Arc (The National Organization of and for people with mental retardation
and related developmental disabilities and their families.) 2003
Down Syndrome.
Available online: http://thearc.org
The Arc. 2003.
Facts about Alcohol Use During Pregnancy: What is meant in warnings to
pregnant women not to drink alcohol.
Available online: http://www.thearc.org
The Arc. 2003.
Genetic Causes of Mental Retardation.
Available online: http://www.thearc.org
The Arc. 2003.
Genetic Issues in Mental Retardation: A report on the Arc’s Human Genome
Education Project. Vol. 2. No.2.
Available online: http://www.thearc.org
The Arc. 2003.
Introduction to Mental Retardation.
Available online: http://www.thearc.org
The Arc. 2003.
Phenylketonuria (PKU): What is PKU?
Available online: http://www.thearc.org
The Arc. 2003.
Prader-Willi Syndrome: By Prader-Willi Syndrome (USA): What is Prader-Willi
Syndrome (PWS)?
Available online: http://www.thearc.org
The Arc. 2003.
Shaken Baby Syndrome: What is Shaken Baby Syndrome?
Available online: http://www.thearc.org
Mayo Clinic
Autism
Available online: http://www.mayoclinic.com
The National Fragile X Foundation. 2003.
Braden, M. L.
Behavioural Treatment of Aggressive Behaviour.
Available online: http://www.fragilex.org
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The National Fragile X Foundation. 2003.
Quick Summary of Fragile X Syndrome.
Available online: http://www.fragilex.org
The National Fragile X Foundation. 2003.
Therapy for Behaviour Disorders
Available online: http://www.fragilex.org
The National Fragile X Foundation. 2003.
What kinds of Goals and Strategies are Most Important in Occupational
Therapy?
Available online: http://www.fragilex.org
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Issue: The person has difficulty learning new information.
Implication:
The person with an
intellectual disability
may not understand the
information the first time
it is presented.
Solution:
Present the information in small amounts at a time.
Present the information using different methods,
verbally, visually or with gestures. If appropriate
use media such as story telling, clay making or
drama as ways of presenting or reinforcing
information.
Make sure information is presented in context.
Try to make learning situations fun, as fun activities
are more easily remembered.
If the person remembers information better when it
is visually presented, use this medium as much as
possible, eg through photographs, video, pictures,
drawing, maps etc.
Try to keep groups small.
Program breaks in the sessions/activities.
Plan activities at a time of day when the
concentration is at its best.
If a person is in a group with others of mixed
abilities, have different expectations of the person
with an intellectual disability. For example rather
than expecting them to remember all of the
information you have presented, expect them to
remember a small section of the information.
Utilise the skills that are already present. For
example the person may be good at drawing,
reading maps, remembering numerical information.
Try to have more than one group leader to ensure
the person with an intellectual disability can have
some individual attention.
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Issue: The person has difficulties with manipulating fine objects.
Implication:
Solution:
The person may have Make sure pens/pencils and crayons are available
decreased ability to hold in different diameters to allow for choice of material.
pens/pencils with thin
diameter. Which may Ensure that the room has a power outlet and table,
discourage participation if a laptop or tape recorder is required.
in drawing, writing
activities of
Ensure there is room for a personal helper, if
learning/communication. required.
Other communication
media may need to be
used. E.g. typing,
recorded information, or
someone to take notes
for the person
Activities of expression may be better achieved
through other media, eg play-dough, gross motor
movements and drama. Think how appropriate this
may be for the individual, group and developmental
age of the group/individual.
A good seat and table must be provided to allow for
the trunk to be stable; this will help with the ability
to coordinate fine motor activities.
Issue: The person is distracted easily.
Implication:
The person may not be
able to concentrate on
the whole activity.
Solution:
Ensure the person is not sitting next to people who
are distracting.
If appropriate, get the person to sit near the group
leader. The group leader may be able to encourage
the person to focus. They also may be able to
gauge the person’s concentration level, which will
help the leader in planning when to provide breaks
in the activity or when to change to another activity.
Plan the activity for when the person is known to
concentrate best, if possible.
Provide the opportunity to move in the break times
and also during the activity if possible.
Provide a quiet area to allow the person to have
breaks as required.
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Issue: The person is hyperactive and/or has repetitive movements.
Implication:
Solution:
The person may not be Mix sessions with activity and quiet times. Provide
able to sit still thorough frequent breaks.
the whole activity.
Provide interactive activities/sessions that enable
the need for movement to be constructively
channelled.
Also provide quiet activities where the person is
able to sit and relax, for example use videos, music
story telling as appropriate.
Make sure the environment is not too distracting:
Lights should not be too bright; noise levels should
not be too high; extra noise such as radio and
television should be turned off when they are not
being used for the activity. There should not be too
many people in groups, and there should not be too
much talking at the same time.
Provide a space/room where the person with an
intellectual disability can go for quiet time if they
require time away from the activity.
If the group activity is too stressful to the person,
give them the option of participating in something
less demanding, or of going to the designated
space for quiet time, if they would prefer some time
out.
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Issue: The person with an intellectual disability has reduced language
skills.
Implication:
Solution:
People may not be able Assist the person to understand by adding gestures
to participate in to verbal explanations if possible.
activities that are
language based very Use pictorial cues such as photos, drawings and
easily.
maps to help understanding.
Make sure the environment is not too noisy, and
only one person talks at a time to provide the
person with the best chance of hearing the
message.
Do not use jargon in written or spoken
communication.
Allow extra time for the person to process the
message.
Issue: The person does not like change in their routine.
Implication:
Solution:
The person may Plan the activity prior to commencing it.
become upset if the
planned activity Provide the person with descriptions about the
changes, or if the activity.
activity finishes and eg: The environment in which the activity will occur.
they are not yet How many people will be at the activity.
prepared to move on to Who will be present at the activity.
the next activity. The planned sequence of the activity.
Use visual cues to explain an event if possible. For
example if it is a church picnic, show them pictures
of the last picnic and point out people they already
know.
Prepare the person for any changes in the activity.
Provide the person with notice well in advance of
the end of one activity and if another activity is
scheduled, tell the person what they will be doing
next. Provide clear information eg: “When the cake
is out of the oven, we will finish cooking. After
cooking we will go for a for a walk.”
Allow time for the person to understand and
prepare for a change in the activity or routine.
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Issue: The person’s understanding of how to greet someone, or of
physical affection is not based on context.
Implication:
Solution:
The person may Teach the person how to greet people in a manner
provide affection or that is socially acceptable. Societal expectation
make a greeting in a tends to be based on how old the person appears
manner in which other and not on their developmental age.
people do not feel
comfortable.
Make sure messages are consistent.
The person may be at
risk of unwanted
physical/sexual
advances.
Explain and model appropriate behaviour. This will
hopefully provide the person with an intellectual
disability an idea of when to shake hands, hug of
kiss someone. When modelling/explaining
appropriate ways of addressing or greeting a
person, consider the following aspects of
communication: How well acquainted the people
are; generational differences; cultural differences;
and whether the person is in a public or private
setting.
Discourage inappropriate displays of affection such
as hugging strangers.
Explain and reinforce to the person with an
intellectual disability that they have the right to
refuse to be touched at any time.
Identify a responsible person/people with whom the
person feels safe and to whom they relate well.
Make sure the person with an intellectual disability
knows they can tell these people/ that person if
they have ever been inappropriately touched.
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