Intellectual Disability earlier known as Mental Retardation

Clinical Characteristics of Intellectual Disabilities

DIAGNOSIS AND ASSESSMENT

Intelligence is the general mental capacity that involves reasoning, planning, solving problems,
thinking abstractly, comprehending complex ideas, learning efficiently, and learning from
experience (American Association on Intellectual and Developmental Disabilities, AAIDD, 2010).
Historically, intellectual disability (previously termed “mental retardation”) has been defined by
significant cognitive deficits—which has been established through a standardized measure of
intelligence, in particular, with an IQ score of below 70 (two standard deviations below the mean
of 100 in the population)—and also by significant deficits in functional and adaptive skills.
Adaptive skills involve the ability to carry out age-appropriate daily life activities. Two different
systems for classifying intellectual disability (ID) used in the United States are that of the
American Association on Intellectual and Developmental Disabilities (AAIDD) and the Diagnostic
and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), which is published by the
American Psychiatric Association. Both of these systems classify severity of ID according to the
levels of support needed to achieve an individual's optimal personal functioning (Table 1).

DSM-5 defines intellectual disabilities as neurodevelopmental disorders that begin in childhood

and are characterized by intellectual difficulties as well as difficulties in conceptual, social, and
practical areas of living. The DSM-5 diagnosis of ID requires the satisfaction of three criteria:

1. Deficits in intellectual functioning—“reasoning, problem solving, planning, abstract thinking,

judgment, academic learning, and learning from experience”—confirmed by clinical evaluation
and individualized standard IQ testing (APA, 2013, p. 33);

2. Deficits in adaptive functioning that significantly hamper conforming to developmental and

sociocultural standards for the individual's independence and ability to meet their social
responsibility; and
3. The onset of these deficits during childhood.

The DSM-5 definition of ID encourages a more comprehensive view of the individual than was
true under the fourth edition, DSM-IV. The DSM-IV definition included impairments of general
mental abilities that affect how a person functions in conceptual, social, and daily life areas.
DSM-5 abandoned specific IQ scores as a diagnostic criterion, although it retained the general
notion of functioning two or more standard deviations below the general population. DSM-5 has
placed more emphasis on adaptive functioning and the performance of usual life skills. In contrast
to DSM-IV, which stipulated impairments in two or more skill areas, the DSM-5 criteria
point to impairment in one or more superordinate skill domains (e.g., conceptual, social,
practical) (Papazoglou et al., 2014).

Details of the diagnostic criteria for ID in DSM-5 are as follows:

1. Deficits in intellectual functioning

This includes various mental abilities:
• • Reasoning;

• • Problem solving;

• • Planning;

• • Abstract thinking;

• • Judgment;

• • Academic learning (ability to learn in school via traditional teaching methods);

• • Experiential learning (the ability to learn through experience, trial and error, and
observation).

These mental abilities are measured by IQ tests. A score of approximately two standard deviations
below average represents a significant cognitive deficit. These scores would occur about 2.5% of
the population. Or stated differently, 97.5% of people of the same age and culture would score
higher. The tests used to measure IQ must be standardized and culturally appropriate. This is
typically an IQ score of 70 or below.

2. Deficits or impairments in adaptive functioning

This includes skills needed to live in an independent and responsible manner. Limited abilities in
these life skills make it difficult to achieve age appropriate standards of behavior. Without these
skills, a person needs additional supports to succeed at school, work, or independent life. Deficits
in adaptive functioning are measured using standardized, culturally appropriate tests.
Various skills are needed for daily living:
• • Communication: This refers to the ability to convey information from one person to
another. Communication is conveyed through words and actions. It involves the ability to
understand others, and to express one's self through words or actions.
• • Social skills: This refers to the ability to interact effectively with others. We usually take
social skills for granted. However, these skills are critical for success in life. These skills include
the ability to understand and comply with social rules, customs, and standards of public behavior.
This intricate function requires the ability to process figurative language and detect unspoken
cues such as body language.
• • Personal independence at home or in community settings: This refers to the ability to
take care of yourself. Some examples are bathing, dressing, and feeding. It also includes the
ability to safely complete day-to-day tasks without guidance. Some examples are cooking,
cleaning, and laundry. There are also routine activities performed in the community. This includes
shopping for groceries and accessing public transportation.

• • School or work functioning: This refers to the ability to conform to the social standards
at work or school. It includes the ability to learn new knowledge, skills, and abilities.
Furthermore, people must apply this information in a practical, adaptive manner; without
excessive direction or guidance.
3. These limitations occur during the developmental period. This means problems with
intellectual or adaptive functioning were evident during childhood or adolescence. If these
problems began after this developmental period, the correct diagnosis would be neurocognitive
disorder. For instance, a traumatic brain injury from a car accident could cause similar symptoms.

Classifications of Severity
The terms “mild,” “moderate,” “severe,” and “profound” have been used to describe the severity
of the condition . This approach has been helpful in that aspects of mild to moderate ID differ
from severe to profound ID. The DSM-5 retains this grouping with more focus on daily skills
than on specific IQ range.

Mild to Moderate Intellectual Disability

The majority of people with ID are classified as having mild intellectual disabilities. Individuals
with mild ID are slower in all areas of conceptual development and social and daily living skills.
These individuals can learn practical life skills, which allows them to function in ordinary life
with minimal levels of support. Individuals with moderate ID can take care of themselves, travel
to familiar places in their community, and learn basic skills related to safety and health. Their
self-care requires moderate support.

Severe Intellectual Disability

Severe ID manifests as major delays in development, and individuals often have the ability to
understand speech but otherwise have limited communication skills (Sattler, 2002). Despite being
able to learn simple daily routines and to engage in simple self-care, individuals with severe ID
need supervision in social settings and often need family care to live in a supervised setting such
as a group home.

Profound Intellectual Disability

Persons with profound intellectual disability often have congenital syndromes (Sattler, 2002).
These individuals cannot live independently, and they require close supervision and help with
self-care activities. They have very limited ability to communicate and often have physical
limitations. Individuals with mild to moderate disability are less likely to have associated medical
conditions than those with severe or profound ID.
Evaluation of Severity
Currently AAIDD publishes a framework for evaluating the severity of ID, the Supports Intensity
Scale (SIS), which focuses on the types and intensities of supports needed to enable an individual
to lead a normal and independent life, rather than defining severity in terms of deficits. The SIS
evaluates the support needs of an individual across 49 life activities, divided into six categories:
home living, community living, life-long learning, employment, health and safety, and social
activities.
DSM-5 notes that intellectual functioning reflects several different components: verbal
comprehension, working memory, perceptual reasoning, quantitative reasoning, abstract thought,
and cognitive efficacy (APA, 2013). Accurate measurement requires an instrument that is
psychometrically valid, culturally appropriate, and individually administered. In the absence of
appropriate measurement instruments, screening instruments are still able to assist in the
identification individuals who need further testing. IQ test results fall along the normal (bell-
shaped) curve, with an average IQ of 100, and individuals who are intellectually disabled are
usually two standard deviations below the average (IQ below 70). Various issues (e.g., co-
occurring communication problems, sensory or motor difficulties) can affect assessment, and
psychologists must address these in considering which tests to use. IQ scores are usually reported
with an associated confidence interval which indicates a range within which the “true” score is
likely to fall.
A frequently used IQ measure for children in the United States is the Wechsler Intelligence Scale
for Children (WISC-V). It historically measured verbal IQ, performance IQ, and full performance
IQ (Wechsler et al., 2004). In its most recent edition, the WISC-V provides an overall IQ score as
well as five other scores for verbal comprehension, visual spatial skills, fluid reasoning, working
memory, and processing speed (Pearson Education, 2015). Because IQ scores have been
constantly rising since the 1930s, standardized IQ tests have been periodically renormed based on
the current population (Flynn, 1987).
FUNCTIONAL IMPAIRMENT
The diagnosis of ID requires evidence of impairments in real life (adaptive) skills; thus, all people
with ID demonstrate functional impairment. These adaptive abilities relate to such things as
understanding rules, the ability to navigate the tasks of daily living, and participation in family,
school, and community activities. Various assessments of such skills are available, such as the
Vineland Adaptive Behavior Scales which is a widely used instrument (Sparrow et al., 2005).
Assessment of these skills helps to plan remediation, i.e., teaching specific skills and working on
generalization of skills.

DEMOGRAPHIC FACTORS AND DURATION OF THE DISORDER

ID begins in the first two decades of life. The age and characteristics of onset depend on the cause
of the disability and the severity of the neuropsychiatric dysfunction. The identification of
children with more severe ID (what previously would have been termed severe and profound
mental retardation) typically occurs early in life. These children often have dysmorphic features
and associated medical conditions and higher rates of behavioral and psychiatric disturbances.
Individuals with severe intellectual disability may show delayed motor, language, and social
accomplishments within the first 2 years of life. Individuals with mild intellectual disability may
not be recognized until early school age because that is when their difficulties with academic
learning become apparent.
Depending on its cause, ID may be stable and nonprogressive or it may worsen with time. After
early childhood, the disorder is chronic and usually lasts an individual's lifetime; however, the
severity of the disorder may change with age. For example, visual or hearing difficulties,
epilepsy, childhood psychological or head trauma, substance abuse, and other medical conditions
may affect the course of the disorder. Conversely, an early intervention may improve adaptive
skills.

Prevalence and Gender Ratio

Males are more likely than females to be diagnosed with ID. According to the National Health
Interview Survey, from 1997 to 2008 the prevalence of ID was 0.78 percent in boys and 0.63
percent in girls (Boyle et al., 2011). Overall, studies of prevalence show a male excess in the
prevalence of ID, which is partially explained by x-linked causes of the disability, such as fragile
X syndrome (Durkin et al., 2007).

Race/Ethnicity
In the United States, the prevalence of ID varies by race/ethnicity, probably due to confounding
by socioeconomic status (SES). Black non-Hispanic children are approximately twice as likely,
and Hispanic children approximately one and a half times as likely, to be diagnosed with ID as
white non-Hispanic children (Bhasin et al., 2006; Boyle and Lary, 1996; Boyle et al., 2011; Camp
et al., 1998; Van Naarden Braun et al., 2015). Language differences and poverty are likely to
contribute to the racial and ethnic differences in performance on cognitive tests and to the
corresponding disparities in prevalence. Even after taking the effects of SES into account, there is
evidence that test bias and diagnostic bias affects the rates of the diagnosis of ID (Jencks and
Phillips, 1998).
Socioeconomic Status
Poverty is one of the most consistent risk factors for ID (Cooper and Lackus, 1983; Durkin et al.,
1998; Stein and Susser, 1963). Boyle and colleagues reported that in the United States between
1997 and 2008, the prevalence of ID among children below 200 percent of the federal poverty
level (FPL) was 1.03 percent, while for those above 200 percent FPL the rate was 0.5 percent
(Boyle et al., 2011). Similarly, Camp and colleagues found the prevalence of ID among children
of low SES to be more than twice as high as that among middle- or high-SES children (Camp et
al., 1998). The association between low SES and poverty is considerably stronger for mild than
for more severe levels of ID (Drews et al., 1995; Durkin et al., 1998).

COMORBIDITIES

Many neurodevelopmental, psychiatric, and medical disorders co-occur with ID, especially
communication disorders, learning disabilities, cerebral palsy, epilepsy, and various genetically
transmitted conditions (APA, 2013). Estimates of the rates of psychiatric coexisting conditions
vary. For many years there was an underestimation of the increased risk for development of
comorbid conditions (“diagnostic overshadowing”). As research was conducted, it became clear
that the risk for comorbid conditions is greater than previously believed. For example, Rutter and
colleagues (1970) reported rates of 30 to 42 percent of psychopathology in children with
“mental retardation” compared with 6 to 7 percent in children without the disability. Gillberg
and colleagues (1986) reported that 57 percent of subjects with mild and severe “mental
retardation” met diagnostic criteria for affective, anxiety, conduct, schizophrenia, and
somatoform disorders and attention deficit hyperactivity disorder (ADHD). Most studies indicate
a four- to fivefold increase in mental health problems among individuals with ID. In general, at
least 25 percent of persons with ID may have significant psychiatric problems, with the
population experiencing, in particular, significantly increased rates of schizophrenia, depression,
and ADHD (Bouras and Holt, 2007; Fletcher et al., 2007).