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