INTELLECTUAL DISABILITY

Transcription

1 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. 139

2 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. 140

3 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. 141

4 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 The Child With Autism. Available online: American Academy of Child and Adolescent Psychiatry Children who are Mentally Retarded. Available online: American Academy of Pediatrics. Policy Statement: Sexuality Education of Children and Adolescents With Developmental Disabilities (RE9603). Available online: American Medical Association, Journal of the American Medical Association, Vol 288. no.12, September Available online: Australian Institute of Health and Welfare (1997) Media Release: Almost 1% of Australians with an Intellectual Disability. Available online: 142

5 Australian Institute of Health and Welfare (1997) The Definition and Prevalence of Intellectual Disability in Australia. Available online: The Arc (The National Organization of and for people with mental retardation and related developmental disabilities and their families.) 2003 Down Syndrome. Available online: Facts about Alcohol Use During Pregnancy: What is meant in warnings to pregnant women not to drink alcohol. Genetic Causes of Mental Retardation. Genetic Issues in Mental Retardation: A report on the Arc s Human Genome Education Project. Vol. 2. No.2. Introduction to Mental Retardation. Phenylketonuria (PKU): What is PKU? Prader-Willi Syndrome: By Prader-Willi Syndrome (USA): What is Prader-Willi Syndrome (PWS)? Shaken Baby Syndrome: What is Shaken Baby Syndrome? Mayo Clinic Autism Available online: The National Fragile X Foundation Braden, M. L. Behavioural Treatment of Aggressive Behaviour. Available online: 143

6 The National Fragile X Foundation Quick Summary of Fragile X Syndrome. Available online: The National Fragile X Foundation Therapy for Behaviour Disorders Available online: The National Fragile X Foundation What kinds of Goals and Strategies are Most Important in Occupational Therapy? Available online: 144

7 Issue: The person has difficulty learning new information. The person with an intellectual disability may not understand the information the first time it is presented. 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. 145

8 Issue: The person has difficulties with manipulating fine objects. 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. The person may not be able to concentrate on the whole activity. 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. 146

9 Issue: The person is hyperactive and/or has repetitive movements. 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. 147

10 Issue: The person with an intellectual disability has reduced language skills. 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. 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. 148

11 Issue: The person s understanding of how to greet someone, or of physical affection is not based on context. 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. 149