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Intellectual Disability (Mental Retardation)
What is intellectual disability?
What are the signs of intellectual disability in children?
What causes intellectual disability?
How is intellectual disability diagnosed?
What services are available for people with intellectual disability?
What can I do to help my intellectually disabled child?
What is intellectual disability?
Is intellectual disability the same as mental retardation? Why do some programs and regulations still say mental retardation?
Is intellectual disability the same as developmental disabilities?
Is intellectual disability determined by just an IQ test?
What causes intellectual disability?
What is the most modern thinking about how to help people with intellectual disability?
What role has AAIDD played in defining intellectual disabilty?
Can intellectual disability be prevented?
How is intellectual disability diagnosed?
What services are available for people with intellectual disability?
What can I do to help my intellectually disabled child?
Intellectual disability (ID), once called mental retardation, is characterized by below-average intelligence or mental ability and a lack of skills necessary for day-to-day living. People with intellectual disabilities can and do learn new skills, but they learn them more slowly. There are varying degrees of intellectual disability, from mild to profound.

What is intellectual disability?
Someone with intellectual disability has limitations in two areas. These areas are:

Intellectual functioning. Also known as IQ, this refers to a person’s ability to learn, reason, make decisions, and solve problems. Adaptive behaviors. These are skills necessary for day-to-day life, such as being able to communicate effectively, interact with others, and take care of oneself.

IQ (intelligence quotient) is measured by an IQ test. The average IQ is 100. A person is considered intellectually disabled if he or she has an IQ of less than 70 to 75.

To measure a child’s adaptive behaviors, a specialist will observe the child’s skills and compare them to other children of the same age. Things that may be observed include how well the child can feed or dress himself or herself; how well the child is able to communicate with and understand others; and how the child interacts with family, friends, and other children of the same age.

Intellectual disability is thought to affect about 1% of the population. Of those affected, 85% have mild intellectual disability. This means they are just a little slower than average to learn new information or skills. With the right support, most will be able to live independently as adults.

What are the signs of intellectual disability in children?
There are many different signs of intellectual disability in children. Signs may appear during infancy, or they may not be noticeable until a child reaches school age. It often depends on the severity of the disability. Some of the most common signs of intellectual disability are:

Rolling over, sitting up, crawling, or walking late Talking late or having trouble with talking Slow to master things like potty training, dressing, and feeding himself or herself Difficulty remembering things Inability to connect actions with consequences Behavior problems such as explosive tantrums Difficulty with problem-solving or logical thinking In children with severe or profound intellectual disability, there may be other health problems as well. These problems may include seizures, mental disorders, motor handicaps, vision problems, or hearing problems.

What causes intellectual disability?
Anytime something interferes with normal brain development, intellectual disability can result. However, a specific cause for intellectual disability can only be pinpointed about a third of the time.

The most common causes of intellectual disability are:

Genetic conditions. These include things like Down syndrome and fragile X syndrome.
Problems during pregnancy. Things that can interfere with fetal brain development include alcohol or drug use, malnutrition, certain infections, or preeclampsia.
Problems during childbirth. Intellectual disability may result if a baby is deprived of oxygen during childbirth or born extremely premature.
Illness or injury. Infections like meningitis, whooping cough, or the measles can lead to intellectual disability. Severe head injury, near-drowning, extreme malnutrition, exposure to toxic substances such as lead, and severe neglect or abuse can also cause it.

How is intellectual disability diagnosed?
Intellectual disability may be suspected for many different reasons. If a baby has physical abnormalities that suggest a genetic or metabolic disorder, a variety of tests may be done to confirm the diagnosis. These include blood tests, urine tests, imaging tests to look for structural problems in the brain, or electroencephalogram (EEG) to look for evidence of seizures.

In children with developmental delays, the doctor will perform tests to rule out other problems, including hearing problems and certain neurological disorders. If no other cause can be found for the delays, the child will be referred for formal testing.

Three things factor into the diagnosis of intellectual disability: interviews with the parents, observation of the child, and testing of intelligence and adaptive behaviors. A child is considered intellectually disabled if he or she has deficits in both IQ and adaptive behaviors. If only one or the other is present, the child is not considered intellectually disabled.

After a diagnosis of intellectual disability is made, a team of professionals will assess the child’s particular strengths and weaknesses. This helps them determine how much and what kind of support the child will need to succeed at home, in school, and in the community.

What services are available for people with intellectual disability?
For babies and toddlers, early intervention programs are available. A team of professionals works with parents to write an Individualized Family Service Plan, or IFSP. This document outlines the child’s specific needs and what services will help the child thrive. Early intervention may include speech therapy, occupational therapy, physical therapy, family counseling, training with special assistive devices, or nutrition services.

School-aged children with intellectual disabilities (including preschoolers) are eligible for special education for free through the public school system. This is mandated by the Individuals With Disabilities Education Act (IDEA). Parents and educators work together to create an Individualized Education Program, or IEP, which outlines the child’s needs and the services the child will receive at school. The point of special education is to make adaptations, accommodations, and modifications that allow a child with an intellectual disability to succeed in the classroom.

What can I do to help my intellectually disabled child?
Steps to help your intellectually disabled child include:

Learn everything you can about intellectual disabilities. The more you know, the better advocate you can be for your child. Encourage your child’s independence. Let your child try new things and encourage your child to do things by himself or herself. Provide guidance when it’s needed and give positive feedback when your child does something well or masters something new.

Get your child involved in group activities. Taking an art class or participating in Scouts will help your child build social skills. Stay involved. By keeping in touch with your child’s teachers, you’ll be able to follow his or her progress and reinforce what your child is learning at school through practice at home. Get to know other parents of intellectually disabled children. They can be a great source of advice and emotional support.

What is intellectual disability?
Intellectual disability is a disability characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. This disability originates before the age of 18.

Is intellectual disability the same as mental retardation? Why do some programs and regulations still say mental retardation?
The term intellectual disability covers the same population of individuals who were diagnosed previously with mental retardation in number, kind, level, type, duration of disability, and the need of people with this disability for individualized services and supports. Furthermore, every individual who is or was eligible for a diagnosis of mental retardation is eligible for a diagnosis of intellectual disability.

While intellectual disability is the preferred term, it takes time for language that is used in legislation, regulation, and even for the names of organizations, to change.

Is intellectual disability the same as developmental disabilities?
"Developmental Disabilities" is an umbrella term that includes intellectual disability but also includes other disabilities that are apparent during childhood.

Developmental disabilities are severe chronic disabilities that can be cognitive or physical or both. The disabilities appear before the age of 22 and are likely to be lifelong.Some developmental disabilities are largely physical issues, such as cerebral palsy or epilepsy. Some individuals may have a condition that includes a physical and intellectual disability, for example Down syndrome or fetal alcohol syndrome.

Intellectual disability encompasses the “cognitive” part of this definition, that is, a disability that is broadly related to thought processes. Because intellectual and other developmental disabilities often co-occur, intellectual disability professionals often work with people who have both types of disabilities.

Is intellectual disability determined by just an IQ test?
No. The evaluation and classification intellectual disability is a complex issue. There are three major criteria for intellectual disability: significant limitations in intellectual functioning, significant limitations in adaptive behavior, and onset before the age of 18.

The IQ test is a major tool in measuring intellectual functioning, which is the mental capacity for learning, reasoning, problem solving, and so on. A test score below or around 70—or as high as 75—indicates a limitation in intellectual functioning.

Other tests determine limitations in adaptive behavior, which covers three types of skills:
•Conceptual skills—language and literacy; money, time, and number concepts; and self-direction
•Social skills—interpersonal skills, social responsibility, self-esteem, gullibility, naïveté (i.e., wariness), social problem solving, and the ability to follow rules, obey laws, and avoid being victimized
•Practical skills—activities of daily living (personal care), occupational skills, healthcare, travel/transportation, schedules/routines, safety, use of money, use of the telephone
AAIDD publishes the most advanced scientific thinking on this matter in the 11th edition of its manual, Intellectual Disability: Definition, Classification, and Systems of Supports. In defining and assessing intellectual disability, AAIDD stresses that, in addtion to an assessement of intellectual functioning and adaptive behavior, professionals must consider such factors as
•community environment typical of the individual’s peers and culture •linguistic diversity
•cultural differences in the way people communicate, move, and behavior

What causes intellectual disability?
There are a number of causes. Our understanding of the causes of intellectual disability focuses on the types of risk factors (biomedical, social, behavioral, and educational) and the timing of exposure (prenatal, perinatal, and postnatal) to those factors.

What is the most modern thinking about how to help people with intellectual disability?
The overarching reason for evaluating and classifying individuals with intellectual disabilities is to tailor supports for each individual, in the form of a set of strategies and services provided over a sustained period.

Our goal is to enhance people’s functioning within their own environment in order to lead a more successful and satisfying life. Some of this enhancement is thought of in terms of self-worth, subjective well being, pride, engagement in political action, and other principles of self-identity.

What role has AAIDD played in defining intellectual disabilty?
AAIDD, the world’s largest and oldest organization of intellectual disability professionals, has played a major role in evolving ideas about and approaches to intellectual disability. In fact, the Association, founded in 1876, has published 11 editions of its definitional manual between 1908 and 2010, each edition containing the latest scientific understanding of the condition.

The first definitions of the condition focused on a failure to adapt socially to the environment. Later definitions added a medical approach that considered heredity and pathology and called for individuals with intellectual disability to be segregated. Then the rise of the cognitive testing movement brought an emphasis on measuring intellectual functioning by IQ test. The IQ test became the way to define the group and classify the people within it.

In its 1959 definition and classification manual, AAIDD first attempted a dual-criterion approach: a definition that mentioned both intellectual functioning and “impairments in maturation, learning, and social adjustment.” In its 1961 manual, AAIDD folded the “impairments” description into the phrase “adaptive behavior,” a term still used today. The definition was refocused in 1992 to reflect a new way of understanding and responding to the condition.. AAIDD moved away from a diagnostic process that identified deficits solely on the basis of an IQ score, and began considering social, environmental, and other elements as well. Most crucially, the emphasis shifted from providing programs to people with intellectual disability to designing and delivering support tailored to each individual to help them reach their highest level of functioning.

The third element of the definition involves age of onset. Early definitions mentioned “the developmental period.” AAIDD’s 2002 definition clarified that the disability originates "before the age of 18.”

It is important to note that the 1992 definition was the first to view intellectual disability as a condition that could be enhanced by provision of supports, rather than as a static, lifelong disability.

Since 1992, the Association has worked to further develop and refine this paradigm shift. The approach is more fully fleshed out in the Association’s 11th and most recent manual, Intellectual Disability: Definition, Classification, and Systems of Supports, published in 2010.

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