What is the outlook for children with intellectual disabilities?
About 2 percent to 3 percent of children are considered intellectually disabled (formerly called mentally retarded). Their general intelligence is significantly below average, and they have difficulty adapting to their environment.
As measured by standardized tests, the average IQ (intelligence quotient) is 100; normal ranges from 90 to 110. The degree of an intellectual disability depends upon how far below this normal range a child's IQ falls. Experts use these lower IQ scores to label a child as mildly, moderately, severely or profoundly retarded. The majority of children with below-average IQ scores are not considered to have an intellectual disability, but below average, with test scores between 70 and 89.
The diagnosis of an intellectual disability can be made only by a certified psychologist capable of administering, scoring, and interpreting a standardized intelligence or cognitive test. The psychologist must also be able to observe and assess adaptive behavior.
Although screening for developmental delays and intellectual disabilities is a central part of pediatric care from birth onward, some children with mild intellectual disabilities and developmental disabilities are not identified until the early school years. Early identification is critical to a better outcome, because a child's developmental handicaps are not necessarily fixed or set, and in fact they are often responsive to appropriate treatment.
Adaptive behavior enables children to interact with, adjust to, and meet the demands of other people and day-to-day living. Specific adaptive behavior includes a child's motor skills, communication abilities, self-help and independent living skills (eating, dressing, toileting), and other everyday skills (using public transportation, maintaining an appropriate job, taking care of a house).
Intellectual disabilities can have a variety of causes, including hereditary disorders such as phenylketonuria (PKU), early alterations in the embryo's development (Down's syndrome), and exposure to toxic substances (alcohol) or infections while the child is in the mother's uterus. Problems in labor and birth that put stress on the baby, or problems after birth like injuries to the brain, can result in an intellectual disability and/or loss of specific functions, such as memory or language abilities. In most cases the cause of intellectual disabilities is not known, having no specific identifiable source.
By middle childhood most youngsters with an intellectual disability have already been assessed and provided with an appropriate school setting. If you have a intellectually disabled child, she is entitled to an education just as any other youngster is. Federal law mandates evaluations to identify children with suspected handicaps and to provide appropriate services for them.
As children with intellectual disabilities progress through the school system and through their own developmental stages, they require an evolving training and/or educational program that is appropriate for their abilities and responsive to their needs and the needs of their families. Initially, these children may need help in acquiring the basic developmental skills (fine and gross motor skills, speech and language skills) that are within their capabilities. As children acquire competence in these areas, they are better able to learn academic and other school-related skills.
Even so, these children still require a special educational setting with more individual attention and support. This is especially true of youngsters who also have behavior problems. However, some of these children can engage in non-academic activities, such as sports, physical education, art, and singing, with their peers who are not intellectually disabled. Increasingly, children with mild cognitive impairments (i.e., mild intellectual disabilities) are being mainstreamed into inclusion classrooms.
Preparing children with intellectual disabilities for both lifelong vocational pursuits and as much independence as possible is the major goal of their education. Even in the elementary-school years, a child with a particular interest or talent might benefit from special training in or exposure to relevant vocations. Specialized vocational training is a major goal in the high school years.
Severe intellectual disabilities
Children with severe and profound degrees of intellectual disabilities constitute a small percentage of intellectually disabled children. These youngsters lack self-care skills. They communicate poorly and often have behavioral problems including repetitive or self-stimulating behavior. Home care is frequently difficult or impossible for parents, and these children are often placed in residential settings and receive special education. Nevertheless, with new trends and philosophies, many experts feel that these children, especially as teenagers or adults, are best served in smaller, more normal environments such as group homes within the community.
Parents can obtain information, support, and services through medical centers, community schools, respite care programs, family support networks and their pediatricians.