Frequently Asked Questions (FAQs)

Language and Terminology:

Language is very powerful.  The words we choose to talk about people who have disabilities can spread awareness and enlightenment, or can perpetuate prejudice and misconceptions.  One of the reasons The Arc changed it’s name several years ago from The Association for Retarded Citizens to The Arc was to get rid of the “R” word, which many people with disabilities and their families find offensive and stigmatizing.  As Self Advocates have stated:  “The term mental retardation has become hurtful.  Stop using it!  Words hurt and labels limit human potential.  It is un-American!  Try calling people by their name.” (from the Vision of the Alliance for Full Participation, September 24, 2005 Washington DC).  If you need to use a term, mention the person first and the term second.  For example:  “A woman with a physical disability” or “A man with and intellectual disability (mental retardation)”.  This is commonly referred to “People First” language.  Never use the terms “victim, defective, patient, suffers from, afflicted or stricken” as these carry serious derogatory connotations that focus on the disability not the person.

The largest professional organization AAMR (The American Association on Mental Retardation) recently changed its name in early 2007 to AAIDD (The American Association on Intellectual and Developmental Disabilities) after using the term Mental Retardation for over 5 decades. 

In the Frequently Asked Questions below, the term Intellectual Disability is used to replace the old term Mental Retardation

What is Intellectual Disability?
An individual is considered to have an intellectual disability based on the following three criteria: intellectual functioning level (IQ) is below 70-75; significant limitations exist in two or more adaptive skill areas; and the condition is present from childhood (defined as age 18 or less)

What are the adaptive skills essential for daily functioning?
Adaptive skill areas are those daily living skills needed to live, work and play in the community. The definition includes ten adaptive skills: communication, self-care, home living, social skills, leisure, health and safety, self-direction, functional academics, community use and work.

Adaptive skills are assessed in the person's typical environment across all aspects of an individual's life. A person with limits in intellectual functioning (IQ) who does not have limits in adaptive skill areas may not be diagnosed as having an intellectual disability.

How many people are affected by Intellectual Disability (mental retardation)?
Various studies have been conducted in local communities to determine the prevalence of mental retardation. The Arc reviewed many of these prevalence studies in the early 1980s and concluded that 2.5 to 3 percent of the general population has intellectual disability (mental retardation) (The Arc, 1982). A 1993 review of prevalence studies generally confirms this distribution (Fryers, 1993).

Based on the 1990 census, an estimated 6.2 to 7.5 million people have intellectual disability. Intellectual Disability is 12 times more common than cerebral palsy and 30 times more prevalent than neural tube defects such as spina bifida. It affects 100 times as many people as total blindness (Batshaw & Perret, 1992).
Intellectual Disability cuts across the lines of racial, ethnic, educational, social and economic backgrounds. It can occur in any family. One out of ten American families is directly affected by intellectual disability.

How does intellectual disability affect individuals?
The effects of intellectual disability vary considerably among people, just as the range of abilities varies considerably among people who do not have this disability.  About 87 percent will be mildly affected and will be only a little slower than average in learning new information and skills. As children, their disability is not readily apparent and may not be identified until they enter school. As adults, many will be able to lead independent lives in the community and will no longer be viewed as having an intellectual disability.

The remaining 13 percent of people with intellectual disability, those with IQs under 50, may have serious limitations in functioning. However, with early intervention, a functional education and appropriate supports as an adult, all can lead satisfying lives in the community.

AAIDD’s (AAMR's) definition no longer labels individuals according to the categories of mild, moderate, severe and profound mental retardation based on IQ level. Instead, it looks at the intensity and pattern of changing supports needed by an individual over a lifetime.

How is Intellectual Disability diagnosed?
The AAIDD process for diagnosing and classifying a person as having mental retardation contains three steps and describes the system of supports a person needs to overcome limits in adaptive skills.

The first step in diagnosis is to have a qualified person give one or more standardized intelligence tests and a standardized adaptive skills test, on an individual basis.

The second step is to describe the person's strengths and weaknesses across four dimensions. The four dimensions are:
    1. Intellectual and adaptive behavior skills
    2. Psychological/emotional considerations
    3. Physical/health/etiological considerations
    4. Environmental considerations

Strengths and weaknesses may be determined by formal testing, observations, interviewing key people in the individual's life, interviewing the individual, interacting with the person in his or her daily life or a combination of these approaches.

The third step requires an interdisciplinary team to determine needed supports across the four dimensions. Each support identified is assigned one of four levels of intensity - intermittent, limited, extensive, pervasive.

Intermittent support refers to support on an "as needed basis." An example would be support that is needed in order for a person to find a new job in the event of a job loss. Intermittent support may be needed occasionally by an individual over the lifespan, but not on a continuous daily basis.

Limited support may occur over a limited time span such as during transition from school to work or in time-limited job training. This type of support has a limit on the time that is needed to provide appropriate support for an individual.

Extensive support in a life area is assistance that an individual needs on a daily basis that is not limited by time. This may involve support in the home and/or support in work. Intermittent, limited and extensive supports may not be needed in all life areas for an individual.

Pervasive support refers to constant support across environments and life areas and may include life-sustaining measures. A person requiring pervasive support will need assistance on a daily basis across all life areas.

What does the term "mental age" mean when used to describe the person's functioning?
The term mental age is used in intelligence testing. It means that the individual received the same number of correct responses on a standardized IQ test as the average person of that age in the sample population.

Saying that an older person with intellectual disability is like a person of a younger age or has the "mind" or "understanding " of a younger person is incorrect usage of the term. The mental age only refers to the intelligence test score. It does not describe the level and nature of the person's experience and functioning in aspects of community life.

What are the causes of Intellectual Disability?
Intellectual Disability can be caused by any condition which impairs development of the brain before birth, during birth or in the childhood years. Several hundred causes have been discovered, but in about one-third of the people affected, the cause remains unknown. The three major known causes of intellectual disability are Down syndrome, fetal alcohol syndrome and fragile X.

The causes can be categorized as follows:

• Genetic conditions - These result from abnormality of genes inherited from parents, errors when genes combine, or from other disorders of the genes caused during pregnancy by infections, overexposure to x-rays and other factors. Inborn errors of metabolism which may produce mental retardation, such as PKU (phenylketonuria), fall in this category. Chromosomal abnormalities have likewise been related to some forms of intellectual disability, such as Down syndrome and fragile X syndrome.
   
• Problems during pregnancy - Use of alcohol or drugs by the pregnant mother can cause disabilities. Malnutrition, rubella, glandular disorders and diabetes, cytomegalovirus, and many other illnesses of the mother during pregnancy may result in a child being born with intellectual disability. Physical malformations of the brain and HIV infection originating in prenatal life may also result in mental retardation.
   
• Problems at birth -Although any birth condition of unusual stress may injure the infant's brain, prematurity and low birth weight predict serious problems more often than any other conditions.

• Problems after birth - Childhood diseases such as whooping cough, chicken pox, measles, and Hib disease which may lead to meningitis and encephalitis can damage the brain, as can accidents such as a blow to the head or near drowning. Substances such as lead and mercury can cause irreparable damage to the brain and nervous system.
   
• Poverty and cultural deprivation - Children in poor families may become disabled because of malnutrition, disease-producing conditions, inadequate medical care and environmental health hazards. Also, children in disadvantaged areas ma be deprived of many common cultural and day-to-day experiences provided to other youngsters. Research suggests that such under-stimulation can result in irreversible damage and can serve as a cause of intellectual and related developmental disabilities.

Can intellectual disability be prevented?
During the past 30 years, significant advances in research have prevented many cases of mental retardation. For example, every year in the United States, we prevent:

• 250 cases of intellectual disability due to phenylketonuria (PKU) by newborn screening and dietary treatment;
   
• 1,000 cases of intellectual disability  due to congenital hypothyroidism thanks to newborn screening and thyroid hormone replacement therapy,
   
• 2,000 cases of intellectual disability or deafness by use of Rhogam to prevent Rh disease and severe jaundice in newborn infants;
   
• 3,000 cases of intellectual disability due to measles encephalitis thanks to measles vaccine; and untold numbers of cases of disability caused by rubella during pregnancy thanks to rubella vaccine (Alexander, 1991).

In addition, with the new vaccine against Hib disease, 3,000 to 4,000 cases of mental retardation can now be prevented.

New attempts at treatment of a variety of causes are being developed. There are now unproved ways to manage head trauma, asphyxia (lack of oxygen) and infectious diseases to reduce their adverse effects on the brain. Early intervention programs with high-risk infants and children have shown remarkable results in reducing the predicted incidence of subnormal intellectual functioning.

Finally, early comprehensive prenatal care and preventive measures prior to and during pregnancy increase a woman's chances of preventing mental retardation.

References

• AAMR (1992). Mental Retardation: Definition. Classification, and Systems of Supports 9th Edition.
   
• Alexander, D. (1991). Keynote Address. In President's Committee on Mental Retardation, Summit on the National Effort to Prevent Mental Retardation and Related Disabilities.
   
• Batshaw, M. and Perret, Y. (1992). Children With Disabilities: A Medical Primer. Baltimore: Paul H. Brookes Publishing Co.
   
• Fryers, T. (1993). Epidemiological Thinking in Mental Retardation: Issues in Taxonomy and Population Frequency. In Bray, N.W., International Review of Research in Mental Retardation, Vol. 19. Novato, Calif: Academic Therapy Publications.
   
• The Arc (1982). The Prevalence of Mental Retardation (out-of-print).
   

Where can I go for more information?
For more information about the new definition and classification system for mental retardation, contact  AAIDD at www.aamr.org or 1-800-424-3688 for phone numbers of the authors who are available to answer specific questions.

Staff at the national headquarters of The Arc can also help you with a variety of other topics related to intellectual and related developmental disabilities. Contact information:  (800) 433-5255 or info@thearc.org

Or, contact your local chapter of The Arc, The Arc of New London County (CT) at www.thearcnlc.org or (860) 889-4435