Intellectual Disability is a new term for what used to be called Mental Retardation. It manifests before the age of 18 years. It is identified by how a person does on tests to measure his/her intelligence and his/her adaptive skills.
Intelligence involves the ability to reason, plan, solve problems, think abstractly, comprehend complex ideas, learn quickly and learn from experience. Intelligence is measured by special tests called intelligence tests. These tests provide a numerical score after measuring the person’s general mental capability with reference to their age. This score is called intelligence quotient or IQ. In general, a person with an IQ test score of about 70 or below is indicative of Intellectual Disability.[1]
Intellectual Disability impacts adaptive skills, these refer to how well a person can deal with the tasks of everyday life. These include the ability to speak and understand; self-management skills (dress, bathe, feed or otherwise care for themselves, manage job responsibilities, manage money); use of community resources; leisure, self-care, and social skills (empathy, social judgement, inter-personal communication, ability to make and retain friendships); self-direction; basic academic skills (reading, writing, and arithmetic); and work skills.
A child is only considered to have Intellectual Disability if he/she displays deficits in both IQ and adaptive behaviour. He/she is not considered to have Intellectual Disability if only one of the two is present.
Persons with Intellectual Disability may have different levels of abilities and skills, with severity being categorized as:
Intellectual Disability affects about 1 – 3% of the population. Doctors are able to identify a specific cause in only 25% of the cases even though there are over 200 known causes of Intellectual Disability.Causes can be categorized as follows:
The most striking symptom that you will notice in your child is impairment of adaptive functioning, rather than low IQ.
Adaptive functioning refers to how effectively individuals cope with common life demands and how well they meet the standards of personal independence expected of someone in their particular age group, socio-cultural background and community setting. This often determines the ability of these young children to make friends. Adaptive functioning may be influenced by factors such as education, motivation, personality characteristics, social and vocational opportunities, and the general medical conditions and disorders that can coexist with Intellectual Disability. Remedial efforts are more likely to improve problems in adaptation than in cognitive IQ.
Some characteristics of Intellectual Disability are:
Intellectual Disability can be diagnosed as follows:
A child is only considered to have Intellectual Disability if he/she displays deficits in both IQ and adaptive behaviour. He/she is not considered to have Intellectual Disability if only one of the two is present.
Usually, Intellectual Disability can be confirmed by:
A diagnosis of Intellectual Disability in a child can be overwhelming. You may find it helpful to hear from other parents – for example, through Parent Support Groups. Learning from their experiences can be a reassuring way to adapt to the diagnosis.
After a diagnosis of Intellectual Disability is made, a team of medical professionals assesses the child. During this assessment, the child’s particular strengths and weaknesses are uncovered to help determine the amount and kind of support that the child needs, to succeed at home, in school and in the community.
General medical tests as well as specialised tests such as neurology (nervous system), psychology, psychiatry, special education, hearing, speech and vision, and physical therapy are useful. An early diagnosis coupled with training enhances the child’s progress. A child’s rate of learning will depend upon the degree of Intellectual Disability present. Formal assessment can give parents and teachers some idea about a child’s degree of Intellectual Disability.
Children with Intellectual Disability may find it hard to use their knowledge or skills in new situations. For example, a child may learn to wash his hands at home. However, he may need help to learn to do the same task at preschool or school.
Given the right support, a child with Intellectual Disability can learn to lead a fulfilling life and make a valuable contribution to society. As a parent of a child with Intellectual Disability, you play an important role in helping your child reach their full potential. There are a number of interventions you can make at home, but you may also need to seek out professional advice and specialist support.
What is the importance of early interventions for a child diagnosed with Intellectual Disability?
Early detection and intervention is very crucial, because it promotes your child’s coping and confidence, and helps to ensure that they can function better and are successfully integrated into society. Early diagnosis helps to put plans for developmental, educational and vocational services in place, in a timely manner. Interventions include specialised therapy, providing adequate information, advocacy and emotional support for the child and the child’s family. They promote the development of your child in key domains of learning, communication and mobility. In addition, any necessary medical treatment can also be administered early.
What interventions are available for a child with Intellectual Disability?
Early intervention programs for children with Intellectual Disabilities include:
What kind of care can I provide at home?
The best place for your child to grow is in his/her own home surrounded by his/her family where he/she can be nurtured with appropriate and non-judgmental stimulation. Every person with Intellectual Disability can learn and develop physically, mentally, socially and emotionally throughout life. However, the learning will probably need more guidance, more time and need to be more structured.
Your child will likely take some time to reach certain milestones, but their achievements are significant and exciting to watch. Be patient, and encourage your young child as they learn.
Learn everything you can about your child’s Intellectual Disability. The more you know, the better an advocate you can be for your child.
Should I enrol my child in a special school?
Your child has a legal right to education. These laws also protect your rights as a parent to be fully informed about or to challenge educational decisions concerning your child. Whether to send your child to a mainstream or special school is a personal decision, based on your child’s needs and your personal preferences.
Some children with Intellectual Disability can do well in a mainstream school but are likely to need individualised help. This could be in the form of Special Education or other related services, which will vary according to their abilities, environment, age and temperament. The point of Special Education in a mainstream setting is to make adaptions, accommodations, and modifications that allow a child with Intellectual Disability to succeed in the classroom and make progress in the general education curriculum. For other children, a special school will provide additional specialised help and the structure they need. Class sizes in special schools tend to be smaller, allowing for more individual attention. When choosing a school for your child, you may want to visit a mainstream school and a special school to decide which setting is better suited to your child.
Teachers and parents can help children with developmental delays and Intellectual Disabilities by[3]:
Most growing children with Intellectual Disabilities recognise that they are behind others of their age. This may result in frustration, withdrawal or anxiety, or even in depression. Since they may not have adequate language skills to talk about their feelings, their feelings could manifest in their behaviour, eating or sleeping habits.
Early diagnosis of psychiatric disorders in children with Intellectual Disability leads to early treatment and medication. Periodic consultation with a child and adolescent psychiatrist can help the family to set appropriate expectations, limits, opportunities to succeed, and other measures to manage the stress of growing up.
Many adolescents with Intellectual Disability will want to date, socialise, and form intimate relationships. You can help your child develop healthy relationships by teaching appropriate social skills and behaviour. Peer acceptance and self-esteem are affected by how well your adolescent child addresses these issues.
Here are some tips:
During your child’s teen years, you could also start to plan for future jobs and living arrangements. Many people who have Intellectual Disability live independently as adults or in group homes/apartments with support services. But most group homes and community centres require a basic level of self-sufficiency, such as being able to eat, dress, and bathe independently. Occupational therapists can assist in these transitions.
Vocational training helps many young adults learn how to work in many settings, such as stores, restaurants, and hotels.
Most individuals with Intellectual Disability can lead at least partially independent lives. The goal is to help the person stay in the family and participate in community life.
Good health and living conditions can considerably improve a person’s life expectancy. Adults with Intellectual Disability require adequate housing and health care; they must not be marginalised or institutionalised. It is important to provide rehabilitative services, vocational opportunities and quality old-age services. This will help them to become productive members of society.
Intellectual Disability has a variety of causes; many of these are known, yet only 25% of all cases have a cause that has been identified. There is no known cure for the condition.
But, by identifying the cause of your child’s condition, professionals working with your child can better develop treatment plans. Certain symptoms, such as late developing social or motor skills, may be addressed by therapy, medication, or learning support systems. Children with mild Intellectual Disability may become high functioning and self-sufficient adults. Proper care throughout childhood increases the ability to reach their highest possible level of function.
See the section on Early Interventions.
There are over 200 causes of Intellectual Disability, ranging from birth defects or brain damage to preventable causes such as environmental and medical conditions, and poverty. Some cases of Intellectual Disabilities can be prevented; however, not all cases can be prevented.
Ways in which cases of Intellectual Disability can be prevented are as follows:
Some cases of Intellectual Disability can be attributed to an abnormality of genes inherited from parents; errors when genes combine; or from other genetic disorders caused during pregnancy. Chromosomal abnormalities that have also been related to Intellectual Disability include Down Syndrome and Fragile X Syndrome.
Prenatal screening for genetic defects and genetic counselling for families at risk of known inherited disorders is therefore recommended.
Also see section on Genetic Counselling.
Prenatal care should begin as soon as a woman suspects she is pregnant, because the health of a baby depends to a large extent on how healthy a mother is during her pregnancy. An expecting mother should ideally obtain a general health assessment at least six months before pregnancy.
During pregnancy, a woman can protect the developing foetus[4] by:
Genetic counselling is recommended for all pregnancies. However, it should especially be sought if:
A number of things are considered when making the decision to perform medical tests. Not all children require that many tests be done. Your child’s presenting concerns, past medical history, family history, physical exam, and results of our evaluation or others will determine which tests, if any, are recommended.
There is no medication to cure Intellectual Disability. Sometimes medication is used for other associated conditions or behavioural problems, such as difficulties with attention or mood.
The majority of children with Intellectual Disability will be able to learn basic reading, writing and arithmetic, which are essential for daily living. Some persons with Intellectual Disability complete high school through open learning systems and integrated education.
Socially, the term ‘mental retardation’ is no longer considered acceptable and therefore has been replaced by the term ‘Intellectual Disability’. ‘Mental retardation’ or the slang word ‘retard’ are degrading and offensive terms as they suggest exclusivity and inferiority. These words are used in the form of an insult, leading to a derogation of persons affected by Intellectual Disability.
We would like to extend our sincere gratitude to Ms. Naira Kalra who reviewed this content and whose suggestions and guidance proved immensely valuable.
The following references were used to compile the above information:
[1] Luckasson, R., Borthwick-Duffy, S., Buntinx, W. H. E., Coulter, D. L., Craig, E. M., Reeve, A., Schalock, R. L., Snell, M. E., Spitalnick, D. M., Spreat, S., & Ed.). Washington DC: American Association on Mental Retardation.
[2] When the baby is in the mother’s womb, it is called a foetus.
[3] http://www.cyh.com/HealthTopics/HealthTopicDetails.aspx?p=114&np=306&id=1876#5
[4] When the baby is in the mother’s womb, it is called a foetus.