Intellectual disability | |
---|---|
Other names | Intellectual developmental disability (IDD), general learning disability |
Children with intellectual disabilities and other developmental conditions competing in the Special Olympics. | |
Specialty | Psychiatry, pediatrics |
Frequency | 153 million (2015) |
Intellectual disability (ID), also known as general learning disability and mental retardation (MR), is a generalized neurodevelopmental disorder characterized by significantly impaired intellectual and adaptive functioning. It is defined by an IQ under 70, in addition to deficits in two or more adaptive behaviors that affect everyday, general living.
Once focused almost entirely on cognition, the definition now includes both a component relating to mental functioning and one relating to an individual's functional skills in their daily environment. As a result of this focus on the person's abilities in practice, a person with an unusually low IQ may still not be considered to have intellectual disability.
Intellectual disability is subdivided into syndromic intellectual disability, in which intellectual deficits associated with other medical and behavioral signs and symptoms are present, and non-syndromic intellectual disability, in which intellectual deficits appear without other abnormalities. Down syndrome and fragile X syndrome are examples of syndromic intellectual disabilities.
Intellectual disability affects about 2–3% of the general population. Seventy-five to ninety percent of the affected people have mild intellectual disability. Non-syndromic, or idiopathic cases account for 30–50% of these cases. About a quarter of cases are caused by a genetic disorder, and about 5% of cases are inherited from a person's parents. Cases of unknown cause affect about 95 million people as of 2013.
Signs and symptoms
Intellectual disability (ID) becomes apparent during childhood and involves deficits in mental abilities, social skills, and core activities of daily living (ADLs) when compared to same-aged peers. There often are no physical signs of mild forms of ID, although there may be characteristic physical traits when it is associated with a genetic disorder (e.g., Down syndrome).The level of impairment ranges in severity for each person. Some of the early signs can include:
- Delays in reaching, or failure to achieve milestones in motor skills development (sitting, crawling, walking)
- Slowness learning to talk, or continued difficulties with speech and language skills after starting to talk
- Difficulty with self-help and self-care skills (e.g., getting dressed, washing, and feeding themselves)
- Poor planning or problem-solving abilities
- Behavioral and social problems
- Failure to grow intellectually, or continued infant childlike behavior
- Problems keeping up in school
- Failure to adapt or adjust to new situations
- Difficulty understanding and following social rules
Moderate ID (IQ 35–49) is nearly always apparent within the first years of life. Speech delays are particularly common signs of moderate ID. People with moderate intellectual disability need considerable supports in school, at home, and in the community in order to fully participate. While their academic potential is limited, they can learn simple health and safety skills and to participate in simple activities. As adults, they may live with their parents, in a supportive group home, or even semi-independently with significant supportive services to help them, for example, manage their finances. As adults, they may work in a sheltered workshop.
People with Severe (IQ 20–34) or Profound ID (IQ 19 or below) need more intensive support and supervision for their entire lives. They may learn some ADLs, but an intellectual disability is considered severe or profound when individuals are unable to independently care for themselves without ongoing significant assistance from a caregiver throughout adulthood. Individuals with profound ID are completely dependent on others for all ADLs and to maintain their physical health and safety. They may be able to learn to participate in some of these activities to limited degree.
Co-morbidity
Autism and intellectual disability
Intellectual disability and autism spectrum disorder (ASD) share clinical characteristics which can result in confusion while diagnosing. Overlapping these two disorders, while common, can be detrimental to a person's well being. Those with ASD that hold symptoms of ID may be grouped into a co-diagnosis in which they are receiving treatment for a disorder they do not have. Likewise, those with ID that are mistaken to have ASD may be treated for symptoms of a disorder they do not have. Differentiating between these two disorders will allow clinicians to deliver or prescribe the appropriate treatments. Comorbidity between ID and ASD is very common; roughly 40% of those with ID also have ASD and roughly 70% of those with ASD also have ID. Both ASD and ID require shortfalls in communication and social awareness as defining criteria. Both ASD and ID are classified by severity; mild, moderate, severe. In addition to those three levels, ID has a fourth classification known as profound.Defining differences
In a study conducted in 2016 surveying 2816 cases, it was found that the top subsets that help differentiate between those with ID and ASD are, "...impaired non-verbal social behavior and lack of social reciprocity, [...] restricted interests, strict adherence to routines, stereotyped and repetitive motor mannerisms, and preoccupation with parts of objects". Those with ASD tend to show more deficits in non-verbal social behavior such as body language and understanding social cues. In a study done in 2008 of 336 individuals with varying levels of ID, it was found that those with ID display fewer instances of repetitive or ritualistic behaviors. It also recognized that those with ASD, when compared to those with ID, were more likely to isolate themselves and make less eye contact. When it comes to classification ID and ASD have very different guidelines. ID has a standardized assessment called the Supports Intensity Scale (SIS), this measures severity on a system built around how much support an individual will need. While ASD also classifies severity by support needed there is no standard assessment, clinicians are free to diagnose severity at their own judgment.Causes
Among children, the cause of intellectual disability is unknown for one-third to one-half of cases. About 5% of cases are inherited from a person's parents.
Genetic defects that cause intellectual disability, but are not
inherited, can be caused by accidents or mutations in genetic
development. Examples of such accidents are development of an extra
chromosome 18 (trisomy 18) and Down syndrome, which is the most common genetic cause. Velocardiofacial syndrome and fetal alcohol spectrum disorders are the two next most common causes. However, there are many other causes. The most common are:
- Genetic conditions. Sometimes disability is caused by abnormal genes inherited from parents, errors when genes combine, or other reasons. The most prevalent genetic conditions include Down syndrome, Klinefelter syndrome, Fragile X syndrome (common among boys), neurofibromatosis, congenital hypothyroidism, Williams syndrome, phenylketonuria (PKU), and Prader–Willi syndrome. Other genetic conditions include Phelan-McDermid syndrome (22q13del), Mowat–Wilson syndrome, genetic ciliopathy, and Siderius type X-linked intellectual disability (OMIM 300263) as caused by mutations in the PHF8 gene (OMIM 300560).[17][18] In the rarest of cases, abnormalities with the X or Y chromosome may also cause disability. 48, XXXX and 49, XXXXX syndrome affect a small number of girls worldwide, while boys may be affected by 49, XXXXY, or 49, XYYYY. 47, XYY is not associated with significantly lowered IQ though affected individuals may have slightly lower IQs than non-affected siblings on average.
- Problems during pregnancy. Intellectual disability can result when the fetus does not develop properly. For example, there may be a problem with the way the fetus's cells divide as it grows. A pregnant woman who drinks alcohol (see fetal alcohol spectrum disorder) or gets an infection like rubella during pregnancy may also have a baby with intellectual disability.
- Problems at birth. If a baby has problems during labor and birth, such as not getting enough oxygen, he or she may have developmental disability due to brain damage.
- Exposure to certain types of disease or toxins. Diseases like whooping cough, measles, or meningitis can cause intellectual disability if medical care is delayed or inadequate. Exposure to poisons like lead or mercury may also affect mental ability.
- Iodine deficiency, affecting approximately 2 billion people worldwide, is the leading preventable cause of intellectual disability in areas of the developing world where iodine deficiency is endemic. Iodine deficiency also causes goiter, an enlargement of the thyroid gland. More common than full-fledged cretinism, as intellectual disability caused by severe iodine deficiency is called, is mild impairment of intelligence. Residents of certain areas of the world, due to natural deficiency and governmental inaction, are severely affected by iodine deficiency. India has 500 million suffering from deficiency, 54 million from goiter, and 2 million from cretinism. Among other nations affected by iodine deficiency, China and Kazakhstan have instituted widespread salt iodization programs. But, as of 2006, Russia had not.
- Malnutrition is a common cause of reduced intelligence in parts of the world affected by famine, such as Ethiopia and nations struggling with extended periods of warfare that disrupt agriculture production and distribution.
- Absence of the arcuate fasciculus.
Diagnosis
According to both the American Association on Intellectual and Developmental Disabilities(Intellectual Disability: Definition, Classification, and Systems of Supports (11th Edition) and the American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders
(DSM-IV), three criteria must be met for a diagnosis of intellectual
disability: significant limitation in general mental abilities
(intellectual functioning), significant limitations in one or more areas
of adaptive behavior across multiple environments (as measured by an adaptive behavior rating scale, i.e. communication, self-help skills, interpersonal skills,
and more), and evidence that the limitations became apparent in
childhood or adolescence. In general, people with intellectual
disability have an IQ below 70, but clinical discretion may be necessary
for individuals who have a somewhat higher IQ but severe impairment in
adaptive functioning.
It is formally diagnosed by an assessment of IQ and adaptive
behavior. A third condition requiring onset during the developmental
period is used to distinguish intellectual disability from other
conditions, such as traumatic brain injuries and dementias (including Alzheimer's disease).
Intelligence quotient
The first English-language IQ test, the Stanford–Binet Intelligence Scales, was adapted from a test battery designed for school placement by Alfred Binet in France. Lewis Terman
adapted Binet's test and promoted it as a test measuring "general
intelligence." Terman's test was the first widely used mental test to
report scores in "intelligence quotient" form ("mental age" divided by
chronological age, multiplied by 100). Current tests are scored in
"deviation IQ" form, with a performance level by a test-taker two
standard deviations below the median score for the test-taker's age
group defined as IQ 70. Until the most recent revision of diagnostic
standards, an IQ of 70 or below was a primary factor for intellectual
disability diagnosis, and IQ scores were used to categorize degrees of
intellectual disability.
Since current diagnosis of intellectual disability is not based
on IQ scores alone, but must also take into consideration a person's
adaptive functioning, the diagnosis is not made rigidly. It encompasses
intellectual scores, adaptive functioning scores from an adaptive
behavior rating scale based on descriptions of known abilities provided
by someone familiar with the person, and also the observations of the
assessment examiner who is able to find out directly from the person
what he or she can understand, communicate, and such like. IQ assessment
must be based on a current test. This enables diagnosis to avoid the
pitfall of the Flynn effect, which is a consequence of changes in population IQ test performance changing IQ test norms over time.
Distinction from other disabilities
Clinically, intellectual disability is a subtype of cognitive deficit or disabilities affecting intellectual abilities,
which is a broader concept and includes intellectual deficits that are
too mild to properly qualify as intellectual disability, or too specific
(as in specific learning disability), or acquired later in life through acquired brain injuries or neurodegenerative diseases like dementia. Cognitive deficits may appear at any age. Developmental disability is any disability that is due to problems with growth and development. This term encompasses many congenital medical conditions that have no mental or intellectual components, although it, too, is sometimes used as a euphemism for intellectual disability.
Limitations in more than one area
Adaptive behavior, or adaptive functioning, refers to the skills
needed to live independently (or at the minimally acceptable level for
age). To assess adaptive behavior, professionals compare the functional
abilities of a child to those of other children of similar age. To
measure adaptive behavior, professionals use structured interviews, with
which they systematically elicit information about persons' functioning
in the community from people who know them well. There are many
adaptive behavior scales, and accurate assessment of the quality of
someone's adaptive behavior requires clinical judgment as well. Certain
skills are important to adaptive behavior, such as:
- Daily living skills, such as getting dressed, using the bathroom, and feeding oneself
- Communication skills, such as understanding what is said and being able to answer
- Social skills with peers, family members, spouses, adults, and others
Other specific skills can be critical to an individual's inclusion in
the community and to developing appropriate social behaviours, as for
example being aware of the different social expectations linked to the
principal lifespan stages (i.e., childhood, adulthood, old age). The
results of a Swiss study suggest that the performance of adults with ID
in recognizing different lifespan stages is related to specific
cognitive abilities and to the type of material used to test this
performance.
Management
By most definitions, intellectual disability is more accurately considered a disability rather than a disease. Intellectual disability can be distinguished in many ways from mental illness, such as schizophrenia or depression.
Currently, there is no "cure" for an established disability, though
with appropriate support and teaching, most individuals can learn to do
many things. Causes, such as congenital hypothyroidism, if detected
early may be treated to prevent development of an intellectual
disability.
There are thousands of agencies around the world that provide
assistance for people with developmental disabilities. They include
state-run, for-profit, and non-profit, privately run agencies. Within
one agency there could be departments that include fully staffed
residential homes, day rehabilitation programs that approximate schools,
workshops wherein people with disabilities can obtain jobs, programs
that assist people with developmental disabilities in obtaining jobs in
the community, programs that provide support for people with
developmental disabilities who have their own apartments, programs that
assist them with raising their children, and many more. There are also
many agencies and programs for parents of children with developmental
disabilities.
Beyond that, there are specific programs that people with
developmental disabilities can take part in wherein they learn basic
life skills. These "goals" may take a much longer amount of time for
them to accomplish, but the ultimate goal is independence. This may be
anything from independence in tooth brushing to an independent
residence. People with developmental disabilities learn throughout their
lives and can obtain many new skills even late in life with the help of
their families, caregivers, clinicians and the people who coordinate
the efforts of all of these people.
There are four broad areas of intervention that allow for active
participation from caregivers, community members, clinicians, and of
course, the individual(s) with an intellectual disability. These include
psychosocial treatments, behavioral treatments, cognitive-behavioral
treatments, and family-oriented strategies.
Psychosocial treatments are intended primarily for children before and
during the preschool years as this is the optimum time for
intervention.
This early intervention should include encouragement of exploration,
mentoring in basic skills, celebration of developmental advances, guided
rehearsal and extension of newly acquired skills, protection from
harmful displays of disapproval, teasing, or punishment, and exposure to
a rich and responsive language environment.
A great example of a successful intervention is the Carolina
Abecedarian Project that was conducted with over 100 children from low
SES families beginning in infancy through pre-school years. Results
indicated that by age 2, the children provided the intervention had
higher test scores than control group children, and they remained
approximately 5 points higher 10 years after the end of the program. By
young adulthood, children from the intervention group had better
educational attainment, employment opportunities, and fewer behavioral
problems than their control-group counterparts.
Core components of behavioral treatments include language and
social skills acquisition. Typically, one-to-one training is offered in
which a therapist uses a shaping procedure in combination with positive
reinforcements to help the child pronounce syllables until words are
completed. Sometimes involving pictures and visual aids, therapists aim
at improving speech capacity so that short sentences about important
daily tasks (e.g. bathroom use, eating, etc.) can be effectively
communicated by the child.
In a similar fashion, older children benefit from this type of training
as they learn to sharpen their social skills such as sharing, taking
turns, following instruction, and smiling.
At the same time, a movement known as social inclusion attempts to
increase valuable interactions between children with an intellectual
disability and their non-disabled peers. Cognitive-behavioral treatments, a combination of the previous two treatment types, involves a strategical-metastrategical learning technique
that teaches children math, language, and other basic skills pertaining
to memory and learning. The first goal of the training is to teach the
child to be a strategical thinker through making cognitive connections
and plans. Then, the therapist teaches the child to be metastrategical
by teaching them to discriminate among different tasks and determine
which plan or strategy suits each task.
Finally, family-oriented strategies delve into empowering the family
with the skill set they need to support and encourage their child or
children with an intellectual disability. In general, this includes
teaching assertiveness skills or behavior management techniques as well
as how to ask for help from neighbors, extended family, or day-care
staff.
As the child ages, parents are then taught how to approach topics such
as housing/residential care, employment, and relationships. The ultimate
goal for every intervention or technique is to give the child autonomy
and a sense of independence using the acquired skills he/she has.
Although there is no specific medication for intellectual
disability, many people with developmental disabilities have further
medical complications and may be prescribed several medications. For
example, autistic children with developmental delay may be prescribed antipsychotics or mood stabilizers to help with their behavior. Use of psychotropic medications such as benzodiazepines
in people with intellectual disability requires monitoring and
vigilance as side effects occur commonly and are often misdiagnosed as
behavioral and psychiatric problems.
Epidemiology
Intellectual disability affects about 2–3% of the general population.
75–90% of the affected people have mild intellectual disability.
Non-syndromic or idiopathic ID accounts for 30–50% of cases. About a quarter of cases are caused by a genetic disorder. Cases of unknown cause affect about 95 million people as of 2013. It is more common in males and in low to middle income countries.
History
Intellectual disability has been documented under a variety of names
throughout history. Throughout much of human history, society was unkind
to those with any type of disability, and people with intellectual
disability were commonly viewed as burdens on their families.
Greek and Roman philosophers, who valued reasoning abilities, disparaged people with intellectual disability as barely human. The oldest physiological view of intellectual disability is in the writings of Hippocrates in the late fifth century BCE, who believed that it was caused by an imbalance in the four humors in the brain.
Caliph Al-Walid
(r. 705–715) built one of the first care homes for intellectually
disabled individuals and built the first hospital which accommodated
intellectually disabled individuals as part of its services. In
addition, Al-Walid assigned each intellectually disabled individual a
caregiver.
Until the Enlightenment
in Europe, care and asylum was provided by families and the church (in
monasteries and other religious communities), focusing on the provision
of basic physical needs such as food, shelter and clothing. Negative
stereotypes were prominent in social attitudes of the time.
In the 13th century, England declared people with intellectual
disability to be incapable of making decisions or managing their
affairs. Guardianships were created to take over their financial affairs.
In the 17th century, Thomas Willis provided the first description of intellectual disability as a disease.
He believed that it was caused by structural problems in the brain.
According to Willis, the anatomical problems could be either an inborn
condition or acquired later in life.
In the 18th and 19th centuries, housing and care moved away from families and towards an asylum model.
People were placed by, or removed from, their families (usually in
infancy) and housed in large professional institutions, many of which
were self-sufficient through the labor of the residents. Some of these
institutions provided a very basic level of education (such as
differentiation between colors and basic word recognition and numeracy),
but most continued to focus solely on the provision of basic needs
of food, clothing, and shelter. Conditions in such institutions varied
widely, but the support provided was generally non-individualized, with
aberrant behavior and low levels of economic productivity regarded as a
burden to society. Individuals of higher wealth were often able to
afford higher degrees of care such as home care or private asylums. Heavy tranquilization and assembly-line methods of support were the norm, and the medical model of disability
prevailed. Services were provided based on the relative ease to the
provider, not based on the needs of the individual. A survey taken in
1891 in Cape Town, South Africa shows the distribution between different
facilities. Out of 2046 persons surveyed, 1,281 were in private
dwellings, 120 in jails, and 645 in asylums, with men representing
nearly two-thirds of the number surveyed. In situations of scarcity of
accommodation, preference was given to white men and black men (whose
insanity threatened white society by disrupting employment relations and
the tabooed sexual contact with white women).
In the late 19th century, in response to Charles Darwin's On the Origin of Species, Francis Galton proposed selective breeding of humans to reduce intellectual disability. Early in the 20th century, the eugenics
movement became popular throughout the world. This led to forced
sterilization and prohibition of marriage in most of the developed world
and was later used by Adolf Hitler as a rationale for the mass murder of people with intellectual disability during the holocaust.
Eugenics was later abandoned as an evil violation of human rights, and
the practice of forced sterilization and prohibition from marriage was
discontinued by most of the developed world by the mid-20th century.
In 1905, Alfred Binet produced the first standardized test for measuring intelligence in children.
Although ancient Roman law had declared people with intellectual disability to be incapable of the deliberate intent to harm that was necessary for a person to commit a crime, during the 1920s, Western society believed they were morally degenerate.
Ignoring the prevailing attitude, Civitans
adopted service to people with developmental disabilities as a major
organizational emphasis in 1952. Their earliest efforts included
workshops for special education teachers and daycamps for children with
disabilities, all at a time when such training and programs were almost
nonexistent.
The segregation of people with developmental disabilities was not
widely questioned by academics or policy-makers until the 1969
publication of Wolf Wolfensberger's seminal work "The Origin and Nature of Our Institutional Models",
drawing on some of the ideas proposed by SG Howe 100 years earlier.
This book posited that society characterizes people with disabilities as
deviant,
sub-human and burdens of charity, resulting in the adoption of that
"deviant" role. Wolfensberger argued that this dehumanization, and the
segregated institutions that result from it, ignored the potential
productive contributions that all people can make to society. He pushed
for a shift in policy and practice that recognized the human needs of
those with intellectual disability and provided the same basic human
rights as for the rest of the population.
The publication of this book may be regarded as the first move towards the widespread adoption of the social model of disability
in regard to these types of disabilities, and was the impetus for the
development of government strategies for desegregation. Successful lawsuits
against governments and an increasing awareness of human rights and
self-advocacy also contributed to this process, resulting in the passing
in the U.S. of the Civil Rights of Institutionalized Persons Act in 1980.
From the 1960s to the present, most states have moved towards the elimination of segregated institutions. Normalization and deinstitutionalization are dominant. Along with the work of Wolfensberger and others including Gunnar and Rosemary Dybwad,
a number of scandalous revelations around the horrific conditions
within state institutions created public outrage that led to change to a
more community-based method of providing services.
By the mid-1970s, most governments had committed to
de-institutionalization, and had started preparing for the wholesale
movement of people into the general community, in line with the
principles of normalization.
In most countries, this was essentially complete by the late 1990s,
although the debate over whether or not to close institutions persists
in some states, including Massachusetts.
In the past, lead poisoning and infectious diseases
were significant causes of intellectual disability. Some causes of
intellectual disability are decreasing, as medical advances, such as
vaccination, increase. Other causes are increasing as a proportion of
cases, perhaps due to rising maternal age, which is associated with several syndromic forms of intellectual disability.
Along with the changes in terminology, and the downward drift in
acceptability of the old terms, institutions of all kinds have had to
repeatedly change their names. This affects the names of schools,
hospitals, societies, government departments, and academic journals. For
example, the Midlands Institute of Mental Subnormality became the
British Institute of Mental Handicap and is now the British Institute of
Learning Disability. This phenomenon is shared with mental health and motor disabilities, and seen to a lesser degree in sensory disabilities.
Terminology
The terms used for this condition are subject to a process called the euphemism treadmill. This means that whatever term is chosen for this condition, it eventually becomes perceived as an insult. The terms mental retardation and mentally retarded were invented in the middle of the 20th century to replace the previous set of terms, which included "imbecile" and "moron"
and are now considered offensive. By the end of the 20th century, these
terms themselves have come to be widely seen as disparaging, politically incorrect, and in need of replacement. The term intellectual disability is now preferred by most advocates and researchers in most English-speaking countries.
The term "mental retardation" was used in the American Psychiatric Association's DSM-IV (1994) and in the World Health Organization's ICD-10 (codes F70–F79). In the next revision, the ICD-11, this term has been replaced by the term "disorders of intellectual development" (codes 6A00–6A04; 6A00.Z for the "unspecified" diagnosis code). The term "intellectual disability (intellectual developmental disorder)" is used in DSM-5 (2013). As of 2013, "intellectual disability (intellectual developmental disorder)" is the term that has come into common use by among educational, psychiatric, and other professionals over the past two decades.
Because of its specificity and lack of confusion with other conditions,
the term "mental retardation" is still sometimes used in professional
medical settings around the world, such as formal scientific research and health insurance paperwork.
The several traditional terms that long predate psychiatry
are simple forms of abuse in common usage today; they are often
encountered in such old documents as books, academic papers, and census forms. For example, the British census of 1901 has a column heading including the terms imbecile and feeble-minded.
Vaguer expressions like developmentally disabled, special, or challenged have been used instead of the term mentally retarded. The term developmental delay was popular among caretakers and parents of individuals with intellectual disability because delay suggests that a person is slowly reaching his or her full potential, rather than having a lifelong condition.
Usage has changed over the years and differed from country to country. For example, mental retardation in some contexts covers the whole field but previously applied to what is now the mild MR group. Feeble-minded used to mean mild MR in the UK, and once applied in the US to the whole field. "Borderline intellectual functioning"
is not currently defined, but the term may be used to apply to people
with IQs in the 70s. People with IQs of 70 to 85 used to be eligible for
special consideration in the US public education system on grounds of
intellectual disability.
- Cretin is the oldest and comes from a dialectal French word for Christian. The implication was that people with significant intellectual or developmental disabilities were "still human" (or "still Christian") and deserved to be treated with basic human dignity. Individuals with the condition were considered to be incapable of sinning, thus "christ-like" in their disposition. This term has not been used in scientific endeavors since the middle of the 20th century and is generally considered a term of abuse. Although cretin is no longer in use, the term cretinism is still used to refer to the mental and physical disability resulting from untreated congenital hypothyroidism.
- Amentia has a long history, mostly associated with dementia. The difference between amentia and dementia was originally defined by time of onset. Amentia was the term used to denote an individual who developed deficits in mental functioning early in life, while dementia included individuals who develop mental deficiencies as adults. Theodor Meynert in the 1890s lectures described amentia as a form of sudden-onset confusion (German: Verwirrtheit), often with hallucinations. This term was long in use in psychiatry in this sense. Emil Kraepelin in the 1910s wrote that “acute confusion (amentia)” is a form of febrile delirium. By 1912, amentia was a classification lumping "idiots, imbeciles, and feeble minded" individuals in a category separate from a dementia classification, in which the onset is later in life. In Russian psychiatry the term “amentia” defines a form of clouding of consciousness, which is dominated by confusion, true hallucinations, incoherence of thinking and speech and chaotic movements. In Russia “amentia” (Russian: аменция) is not associated with intellectual disability and mean only clouding of consciousness.
- Idiot indicated the greatest degree of intellectual disability, where the mental age is two years or less, and the person cannot guard himself or herself against common physical dangers. The term was gradually replaced by the term profound mental retardation (which has itself since been replaced by other terms).
- Imbecile indicated an intellectual disability less extreme than idiocy and not necessarily inherited. It is now usually subdivided into two categories, known as severe intellectual disability and moderate intellectual disability.
- Moron was defined by the American Association for the Study of the Feeble-minded in 1910, following work by Henry H. Goddard, as the term for an adult with a mental age between eight and twelve; mild intellectual disability is now the term for this condition. Alternative definitions of these terms based on IQ were also used. This group was known in UK law from 1911 to 1959–60 as feeble-minded.
- Mongolism and Mongoloid idiot were medical terms used to identify someone with Down syndrome, as the doctor who first described the syndrome, John Langdon Down, believed that children with Down syndrome shared facial similarities with Blumenbach's "Mongolian race". The Mongolian People's Republic requested that the medical community cease use of the term as a referent to intellectual disability. Their request was granted in the 1960s, when the World Health Organization agreed that the term should cease being used within the medical community.
- In the field of special education, educable (or "educable intellectual disability") refers to ID students with IQs of approximately 50–75 who can progress academically to a late elementary level. Trainable (or "trainable intellectual disability") refers to students whose IQs fall below 50 but who are still capable of learning personal hygiene and other living skills in a sheltered setting, such as a group home. In many areas, these terms have been replaced by use of "moderate" and "severe" intellectual disability. While the names change, the meaning stays roughly the same in practice.
- Retarded comes from the Latin retardare, "to make slow, delay, keep back, or hinder," so mental retardation meant the same as mentally delayed.
The term was recorded in 1426 as a "fact or action of making slower in
movement or time". The first record of retarded in relation to being
mentally slow was in 1895. The term mentally retarded was used to replace terms like idiot, moron, and imbecile because retarded was not then a derogatory term. By the 1960s, however, the term had taken on a partially derogatory meaning as well. The noun retard is particularly seen as pejorative; a BBC survey in 2003 ranked it as the most offensive disability-related word, ahead of terms such as spastic (or its abbreviation spaz) and mong. The terms mentally retarded and mental retardation are still fairly common, but currently the Special Olympics, Best Buddies, and over 100 other organizations are striving to eliminate their use by referring to the word retard and its variants as the "r-word", in an effort to equate it to the word nigger and the associated euphemism "n-word",
in everyday conversation. These efforts have resulted in federal
legislation, sometimes known as "Rosa's Law", to replace the term mentally retarded with the term intellectual disability in some federal statutes.
The term mental retardation was a diagnostic term denoting the group of disconnected categories of mental functioning such as idiot, imbecile, and moron derived from early IQ tests, which acquired pejorative connotations in popular discourse. It acquired negative and shameful connotations over the last few decades due to the use of the words retarded and retard as insults. This may have contributed to its replacement with euphemisms such as mentally challenged or intellectually disabled. While developmental disability includes many other disorders, developmental disability and developmental delay (for people under the age of 18) are generally considered more polite terms than mental retardation.
United States
- In North America, intellectual disability is subsumed into the broader term developmental disability, which also includes epilepsy, autism, cerebral palsy, and other disorders that develop during the developmental period (birth to age 18). Because service provision is tied to the designation "developmental disability", it is used by many parents, direct support professionals, and physicians. In the United States, however, in school-based settings, the more specific term mental retardation or, more recently (and preferably), intellectual disability, is still typically used, and is one of 13 categories of disability under which children may be identified for special education services under Public Law 108-446.
- The phrase intellectual disability is increasingly being used as a synonym for people with significantly below-average cognitive ability. These terms are sometimes used as a means of separating general intellectual limitations from specific, limited deficits as well as indicating that it is not an emotional or psychological disability. It is not specific to congenital disorders such as Down syndrome.
The American Association on Mental Retardation changed its name to the American Association on Intellectual and Developmental Disabilities (AAIDD) in 2007, and soon thereafter changed the names of its scholarly journals
to reflect the term "intellectual disability". In 2010, the AAIDD
released its 11th edition of its terminology and classification manual,
which also used the term intellectual disability.
United Kingdom
In the UK, mental handicap had become the common medical term, replacing mental subnormality in Scotland and mental deficiency in England and Wales, until Stephen Dorrell, Secretary of State for Health for the United Kingdom from 1995–97, changed the NHS's designation to learning disability.
The new term is not yet widely understood, and is often taken to refer
to problems affecting schoolwork (the American usage), which are known
in the UK as "learning difficulties". British social workers may use "learning difficulty" to refer to both people with intellectual disability and those with conditions such as dyslexia. In education, "learning difficulties" is applied to a wide range of conditions: "specific learning difficulty" may refer to dyslexia, dyscalculia or developmental coordination disorder,
while "moderate learning difficulties", "severe learning difficulties"
and "profound learning difficulties" refer to more significant
impairments.
In England and Wales between 1983 and 2008, the Mental Health Act 1983
defined "mental impairment" and "severe mental impairment" as "a state
of arrested or incomplete development of mind which includes
significant/severe impairment of intelligence and social functioning and
is associated with abnormally aggressive or seriously irresponsible
conduct on the part of the person concerned."
As behavior was involved, these were not necessarily permanent
conditions: they were defined for the purpose of authorizing detention
in hospital or guardianship. The term mental impairment was removed from the Act in November 2008, but the grounds for detention remained. However, English statute law uses mental impairment
elsewhere in a less well-defined manner—e.g. to allow exemption from
taxes—implying that intellectual disability without any behavioral
problems is what is meant.
A BBC poll conducted in the United Kingdom came to the conclusion that 'retard' was the most offensive disability-related word. On the reverse side of that, when a contestant on Celebrity Big Brother live used the phrase "walking like a retard", despite complaints from the public and the charity Mencap, the communications regulator Ofcom
did not uphold the complaint saying "it was not used in an offensive
context [...] and had been used light-heartedly". It was, however, noted
that two previous similar complaints from other shows were upheld.
Australia
In the past, Australia has used British and American terms
interchangeably, including "mental retardation" and "mental handicap".
Today, "intellectual disability" is the preferred and more commonly used
descriptor.
Society and culture
People with intellectual disabilities are often not seen as full
citizens of society. Person-centered planning and approaches are seen as
methods of addressing the continued labeling and exclusion of socially
devalued people, such as people with disabilities, encouraging a focus
on the person as someone with capacities and gifts as well as support
needs. The self-advocacy movement promotes the right of self-determination and self-direction by people with intellectually disabilities, which means allowing them to make decisions about their own lives.
Until the middle of the 20th century, people with intellectual
disabilities were routinely excluded from public education, or educated
away from other typically developing children. Compared to peers who
were segregated in special schools, students who are mainstreamed or included in regular classrooms report similar levels of stigma and social self-conception, but more ambitious plans for employment.
As adults, they may live independently, with family members, or in
different types of institutions organized to support people with
disabilities. About 8% currently live in an institution or a group home.
In the United States, the average lifetime cost of a person with
an intellectual disability amounts to $223,000 per person, in 2003 US
dollars, for direct costs such as medical and educational expenses. The indirect costs were estimated at $771,000, due to shorter lifespans and lower than average economic productivity.
The total direct and indirect costs, which amount to a little more
than a million dollars, are slightly more than the economic costs
associated with cerebral palsy, and double that associated with serious vision or hearing impairments.
Of the costs, about 14% is due to increased medical expenses (not
including what is normally incurred by the typical person), and 10% is
due to direct non-medical expenses, such as the excess cost of special education compared to standard schooling. The largest amount, 76%, is indirect costs accounting for reduced productivity and shortened lifespans. Some expenses, such as ongoing costs to family caregivers or the extra costs associated with living in a group home, were excluded from this calculation.
Health disparities
People with intellectual disability are usually at a higher risk of
living with complex health conditions such as epilepsy and neurological
disorders, gastrointestinal disorders, and behavioral and psychiatric
problems compared to people without disabilities.
Adults also have a higher prevalence of poor social determinants of
health, behavioral risk factors, depression, diabetes, and poor or fair
health status than adults without intellectual disability.
In the United Kingdom
people with intellectual disability live on average 16 years less than
the general population. Some of the barriers that exist for people with
ID accessing quality healthcare include: communication challenges,
service eligibility, lack of training for healthcare providers,
diagnostic overshadowing, and absence of targeted health promotion
services.
Key recommendations from the CDC for improving the health status for
people with intellectual disabilities include: improve access to health
care, improve data collection, strengthen the workforce, include people
with ID in public health programs, and prepare for emergencies with
people with disabilities in mind.