5

Intellectual Disability (Intellectual

Developmental Disorder)

Everybody is a genius. But if you judge a fish by its ability to climb a tree,
it will live its whole life believing that it is stupid.
—Albert Einstein

CHAPTER PREVIEW

INTELLIGENCE AND DEVELOPMENTAL COURSE Genetic and Constitutional

INTELLECTUAL DISABILITY AND ADULT OUTCOMES Factors
The Eugenics Scare Motivation Neurobiological Influences
Defining and Measuring Changes in Abilities Social and Psychological
Children’s Intelligence and Language and Social Behavior Dimensions
Adaptive Behavior
Emotional and Behavioral PREVENTION, EDUCATION,
The Controversial IQ Problems AND TREATMENT
FEATURES OF INTELLECTUAL Other Physical and Health Prenatal Education and
DISABILITIES Disabilities Screening
Clinical Description CAUSES Psychosocial Treatments
Severity Levels Inheritance and the Role of the
Prevalence Environment

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03
U NTIL THE MID-NINETEENTH CENTURY, chil-
dren and adults who today would be diagnosed as
having an intellectual disability were labeled “idiots”
and often were lumped together with persons suffer-
ing from mental disorders or medical conditions. They
typically were ignored or feared, even by the medical
profession, because their differences in appearance and
ability were so little understood.
Although age-old fears, resentment, and scorn con-
tinue to overshadow many important discoveries about
subnormal intelligence, the field of intellectual disabil-
ity has experienced monumental gains over the past
century in determining causes and providing services.
Advances in understanding the development of chil-
dren with intellectual disability, along with research in
genetics, psychopathology, and other areas, have dra-
matically changed the face of this field.
The term intellectual disability has replaced the pre-
vious term mental retardation in the Diagnostic and Sta-
tistical Manual of Mental Disorders, 5th edition (DSM-5),
based on consensus among professionals, advocacy
groups, and the lay public. Intellectual disability is a neuro-
developmental disorder, a group of conditions with onset
in the developmental period that produce impairments of
social, personal, academic, or occupational functioning
(APA, 2013). Intellectual disability (ID) is characterized
by significant limitations in mental abilities (such as rea-
soning, planning, and judgment) that result in impair-
ments in adaptive functioning, such as conceptual, social,
and practical skills needed to fulfill aspects of everyday
life (Tassé et al., 2012). Although the name has changed,
the three essential elements defining this condition have
remained the same for the past 50 years: intellectual limi-
tations, deficits in adaptive skills, and early onset.
Importantly, modern definitions of intellectual dis-
ability take into account a person’s intellectual func-
tioning within the context of what is typical for that
individual’s peers and culture. Cultural and linguistic
diversity, as well as differences in communication, sen-
sory, motor, and behavioral factors, must be carefully
considered in determining a deficit or disability (Amer-
ican Association on Intellectual and Developmental Dis-
abilities [AAIDD], 2010). Understanding improvements
in knowledge about and treatment of intellectual dis-
ability, as well as understanding the prejudice and igno-
rance that had to be overcome, can be gained by looking
at how the disorder has been viewed over the years.
INTELLIGENCE AND INTELLECTUAL
DISABILITY
Throughout recorded history, persons with intellectual
and other disabilities have suffered scorn and rejection
from others, largely because of fear and ignorance.
124 P A R T 2 Neurodevelopmental Disorders
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The prevailing misunderstanding and mistreatment
of children with intellectual disabilities changed very
little until the end of the eighteenth century, fueled
by the discovery of feral children such as Victor, the
“wild boy of Aveyron” (discussed in Chapter 1), and
by the expansion of humanitarian efforts to assist
other oppressed or neglected groups, such as slaves,
prisoners, the mentally ill, and persons with physical
disabilities.
By the mid-nineteenth century, the concept of
mental retardation had spread from France and Swit-
zerland to much of Europe and North America. During
the same period, Dr. Samuel G. Howe convinced his
contemporaries that training and educating the “feeble-
minded” was a public responsibility, and he opened the
first humanitarian institution in North America for
persons with intellectual disability—the Massachusetts
School for Idiotic and Feeble-Minded Youth.
Parents of children with ID can be credited with
advancing a perspective and response to the need for
long-term care that was completely different from the
prevailing public and professional opinions. By the
1940s, parents began to meet in groups and create local
diagnostic and guidance centers to increase the avail-
ability of humane care. These groups organized in 1950
to form the National Association for Retarded Chil-
dren (now known as The Arc), which quickly estab-
lished a scientific board made up of representatives
from every specialty possible to study, prevent, and care
for persons with intellectual disability (Kanner, 1964).
These efforts gained momentum when President John
F. Kennedy, who had a sister with intellectual disability,
formed the President’s Panel on Mental Retardation
in 1962 and called for a national program to combat
intellectual disability. Soon thereafter, exposés in the
media of the use of solitary confinement and restraints
iStock.com/Moodboard_Images
Ignorance resulted in the segregation of children with
intellectual disabilities, who were subjected to inhumane
treatment. Today, most children with ID are integrated
into regular classrooms.
for persons with ID increased public awareness of and
outrage at the treatment of these individuals.
The Eugenics Scare
Three generations of imbeciles are enough.
—Justice Oliver Wendell Holmes Jr., commenting on the Supreme
Court’s 1927 decision to uphold eugenics sterilization laws
Evolutionary degeneracy theory, a pervasive nineteenth-
century phenomenon, attributed the intellectual and
social problems of children with intellectual disability
to regression to an earlier period in human evolution
(Bowler, 1989). In fact, mental deficiency experts in the
nineteenth century believed they had found the “missing
link” between humans and lower species (Gelb, 1995).
J. Langdon H. Down, best known for the clinical
description of the genetic syndrome that bears his name,
interpreted the “strange anomalies” among his medical
sample of persons with intellectual disability as an evo-
lutionary throwback to the Mongol race (Down, 1866).
Down believed that parents in one racial group might
give birth to a child with intellectual disability who was
a “retrogression” to another group. While grounded in
speculation and misinformed conclusions, evolutionary
degeneracy theory and its notion of inferiority received
growing support by the late-nineteenth century as an
explanation for insanity, mental deficiency, and social
deviance. A Closer Look 5.1 depicts how this popular
theory was conveniently used to explain undesirable
human characteristics.
By 1910, the eugenics movement was gaining
momentum. Eugenics was first defined by Sir Francis
Galton (Charles Darwin’s cousin) in 1883 as “the sci-
ence which deals with all influences that improve the
inborn qualities of a race” (cited in Kanner, 1964,
p. 128). Public and professional emphasis shifted away
A CLOSER The Infamous Kallikaks
LOOK
5.1 Psychologist Henry Goddard, who began one
of the largest training schools for intellectual
disability in the early twentieth century, was also a proponent
of the popular degeneracy theory and eugenics movement. In
his book The Kallikak Family: A Study in the Heredity of Feeble-
Mindedness (1912), Goddard traced two lines of descendants
from a Revolutionary War soldier, Martin Kallikak, who fathered a
child by a “feebleminded barmaid” during the war, which began
the first line, and then fathered other children by a “respectable
girl” he married after the war. The name “Kallikak” was invented
by Goddard from a combination of two Greek words: kalos,
meaning “attractive, pleasing,” and kakos, meaning “bad, evil.”
C H A P T E R 5 Intellectual Disability (Intellectual Developmental Disorder)
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from the needs of persons with intellectual disability
toward a consideration of the needs of society; society
was to be protected from the presumable harm done by
the presence of these persons in the community.
Consequently, persons with intellectual disability
often were blamed for the social ills of the time, which
is a powerful example of how labeling a problem
can quickly become an explanation for it. A Closer
Look 5.2, in fact, shows a 1912 New York Times article
reflecting this public sentiment. The appearance, ability,
and behavior of persons with intellectual disability
were considered evidence of their lack of moral fiber, a
belief that led to the diagnostic term moral imbecile, or
moron, used to describe and explain their differences.
This concept became a straightforward explanation for
acts of deviance and justified wide-ranging attempts to
identify and control such individuals. Morons, consid-
ered the least intellectually impaired (roughly compa-
rable to mild intellectual disability today) were seen as
a threat to society because, unlike the insane, they could
easily pass for normal (Gelb, 1995). The intellectually
impaired and other “undesirables” were seen as a public
menace, to be feared and ostracized.
Defining and Measuring Children’s
Intelligence and Adaptive Behavior
Around 1900, the pioneering work of two French edu-
cators, Alfred Binet and Theophile Simon, led to some
of the first major advancements in the field of chil-
dren’s intellectual functioning. Binet and Simon were
asked to develop a way to identify schoolchildren who
might need special help in school. They approached
this monumental task by developing the first intelli-
gence tests to measure judgment and reasoning, which
they believed were basic processes of higher thought.
Goddard reported that many descendants of the first union
were feebleminded, delinquent, poor, and alcoholic, whereas
those of the second union were of good reputation. He claimed
this outcome was evidence for the inheritance of intelligence,
although he overlooked the two families’ obvious environmen-
tal differences (Achenbach, 1982). A closer look at the disclaimer
from the preface to the book is telling: “It is true that we have
made rather dogmatic statements and have drawn conclusions
that do not seem scientifically warranted by the data.” (Based on
authors’ case material.)
125

A CLOSER Early-Twentieth-Century
LOOK Perspectives on Mental
5.2 Retardation
WEAK-MINDED FILL RANKS OF CRIMINALS
DR. HENRY GODDARD SAYS SOCIAL PROBLEMS CAN BE
SOLVED BY SEGREGATING THEM
WOULD NOT LET THEM MARRY
THIS POLICY WOULD IN TIME LARGELY REDUCE
CRIMES, DISEASE, AND DRUNKENNESS, HE BELIEVES
From the army of 300,000 feeble-minded persons in the
United States come the recruits that swell the ranks of the
drunkards, criminals, paupers, and other social outcasts.
Twenty-five per cent of the girls and boys in our reformatories
are lacking in mental fibre and are unable to discern the dif-
ference between right and wrong or are too weak in character
to do right whenever there is any inducement to do wrong.
Sixty-five per cent of the children have a mother or a father, or
both, who are feeble-minded. This country has so far taken no
steps to segregate these irresponsible persons, so the number
of them is constantly increasing….
This army furnishes the ranks of the criminals, paupers,
drunkards, the ne’er-do-wells, and others who are social mis-
fits. Their incapacity would be a priori cause of believing that
they eventually will become public charges in one form or
another, and investigation, in fact, proves that the groups of
criminals, paupers, etc., actually do contain large percentages
of people mentally irresponsible.
Source: The New York Times, March 10, 1912.
These early test questions asked children to manipu-
late unfamiliar objects such as blocks or figures and
to solve puzzles and match familiar parts of objects.
The test later became the Stanford–Binet scale, which
remains one of the most widely used intelligence tests.
From these beginnings in intellectual testing, gen-
eral intellectual functioning is now defined by an
intelligence quotient (IQ or equivalent) that is based
on assessment with one or more of the standardized,
individually administered intelligence tests, such as the
Wechsler Intelligence Scales for Children, 5th edition
(WISC-V; Wechsler, 2014), the Stanford–Binet, 5th edi-
tion (SB5; Roid & Pomplun, 2012), and the Kaufman
Assessment Battery for Children, 2nd edition (KABC-II;
Kaufman & Kaufman, 2004). These tests assess various
verbal and visual–spatial skills (such as knowledge of
the world, reasoning, and similarities and differences)
and mathematical concepts, which together are pre-
sumed to constitute the general construct known as
“intelligence.”
126 P A R T 2 Neurodevelopmental Disorders
By convention, IQ scores (with a mean of 100 and
a standard deviation of 15) are derived from a stan-
dardized table based on a person’s age and test score.
Because intelligence is defined along a normal distribu-
tion, approximately 95% of the population has scores
within 2 standard deviations of the mean (i.e., between
70 and 130). Subaverage intellectual functioning is
defined, accordingly, as an IQ of about 70 or below
(approximately 2 standard deviations below the mean).
As we will discuss later in this chapter, the defini-
tion of intellectual disability includes not only subav-
erage intellectual functioning, but also a subaverage
level of adaptive functioning. Adaptive functioning
refers to how effectively individuals cope with ordi-
nary life demands, and how capable they are of living
independently and abiding by community standards
(Hodapp et al., 2011). Note that some children and
adolescents may learn to adapt quite well to their envi-
ronment despite their lower intelligence as measured
by an IQ test; therefore, they would not be consid-
ered to have an intellectual disability. Table 5.1 gives
examples of the three major categories of adaptive
behavior (conceptual, social, and practical adaptive
| Behavior
TABLE 5.1 Specific Examples of Adaptive
Skills
Conceptual Skills
Receptive and expressive language
Reading and writing
Money concepts
Self-directions
Social Skills
Interpersonal
Responsibility
Self-esteem
Gullibility (likelihood of being tricked or manipulated)
Naiveté
Follows rules
Obeys laws
Avoids victimization
Practical Skills
Personal activities of daily living such as eating, dressing,
mobility, and toileting
Instrumental activities of daily living such as preparing
meals, taking medication, using the telephone, managing
money, using transportation, and doing housekeeping
activities
Occupational Skills
Maintaining a safe environment
Source: From the American Association on Intellectual and Developmental Disabilities
(AAIDD).
skills). Similar to IQ, these skills are typically assessed
using standardized instruments such as the Adaptive
Behavior Assessment System—Third Edition (ABAS-III;
Harrison & Oakland, 2015) or the Vineland Adaptive
Behavior Scales—Third Edition (Vineland-3; Sparrow,
Cicchetti, & Saulnier, 2016).
The Controversial IQ
If a person’s intelligence is relatively stable over time,
it would be tempting to conclude that it is largely
innate and fixed. On the other hand, if intellectual and
cognitive development is significantly shaped by envi-
ronment, perhaps cognitive growth can be stimulated
at an early age and the level of intellectual disability
decreased.
Because intelligence is measured in relation to age-
mates, IQ generally is stable from childhood through
adulthood (Beaver et al., 2013; Whitaker, 2008). One
exception to this general rule is IQ that is measured
during early infancy, when considerable fluctuation can
still occur. For typically developing children, IQ mea-
sured prior to the first birthday has virtually no correla-
tion with the IQ score achieved at age 12; however, by
the time children are 4 years old, the correlation with IQ
12 years later is high (r 5 0.77) (Neisser et al., 1996).
The picture is dramatically different, however, for
infants and children with developmental delays or
intellectual disability. At the lower IQ levels (say, below
50), even the youngest infants show IQ stability over
time, with correlations between infant and childhood
test scores ranging from 0.50 to 0.97 (Sattler, 2014).
Researchers have discovered a similar pattern of IQ
stability from middle childhood to young adulthood
among children with mild to moderate intellectual
delays (Schneider, Niklas, & Schmiedeler, 2014; Toth &
King, 2010).
Even though the IQ of cognitively delayed infants
and young children is unlikely to change, proper envi-
ronmental circumstances will help children reach their
fullest potential. Since the early 1960s, researchers in
child development and intellectual disability have been
investigating ways to provide early stimulation pro-
grams that will help children with developmental delays
to build on their existing strengths. Despite its strong
genetic component, mental ability is always modified
by experience. Not surprisingly, infancy through early
childhood offer the most significant opportunity for
influencing intellectual ability because of the young
child’s rapid brain development and response to envi-
ronmental stimulation (Campbell & Ramey, 2010;
Pungello et al., 2010).
The importance of genetic makeup notwith-
standing, for some individuals IQ can and does change
C H A P T E R 5 Intellectual Disability (Intellectual Developmental Disorder)
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by 10 to 20 points between childhood and adolescence
(Simonoff, Bolton, & Rutter, 1996). Differences in out-
come vary widely in relation to opportunities for each
child to learn and develop. Children who live in healthy
environments, where caregivers provide appropriate
levels of stimulation and help them manage ambient
levels of stress, are most likely to reach their full poten-
tial. Moreover, tests can sample only a limited spectrum
of intellectual ability, and are incapable of accounting
for each individual’s unique learning history (Sattler,
2014).
Are We Really Getting Smarter?
Scores have risen sharply since the beginning of IQ
testing, ranging from a 5- to a 25-point increase in
a single generation (Kanaya, Scullin, & Ceci, 2003;
Trahan, Stuebing, Fletcher, & Hiscock, 2014). When
James Flynn brought this phenomenon of rising IQ
scores to the attention of scientists in 1987, it became
known as the “Flynn effect.” The gain has averaged
about 3 IQ points per decade, adding up to more than
a full standard deviation since the 1940s. Once a test
is re-normed (about every 15 to 20 years) the mean is
reset to 100, resulting in a brief reversal of this gain in
IQ scores.
In attempting to explain the Flynn effect, scientists
have considered the rising standards of living, better
schooling, better nutrition, medical advances, more
stimulating environments, even the influence of com-
puter games and complex toys (Flynn, 2007; 2012).
IQ tests themselves have once again come under scru-
tiny, as have children’s exposure to problems similar to
those on the tests—like the mazes and puzzles they see
on their cereal boxes and fast-food bags. Yet the consis-
tent IQ gains, accompanied by increases in brain mass
(Woodley et al., 2016) are too large to be the result
simply of increased familiarity with testing methods.
Although the exact cause of the effect remains
unknown, experts on children’s intelligence suspect
that the gains reflect a meaningful aspect of intellec-
tual growth and development. A relatively permissive
and child-focused parenting style has emerged during
recent decades, which may have given children greater
facility with language and stronger overall cognitive
capacity. Moreover, there are unprecedented cultural
differences between successive generations—daily life
and occupational experiences are far more complex
today than in the past. There is a possible downside to
the Flynn effect, however. Test scores drop an average
of 5.6 points among persons with borderline and mild
intellectual disability after a test is re-normed, which
can have a significant impact on a child’s eligibility for
proper educational placement and other related ser-
vices (Kanaya & Ceci, 2012).
127
Are IQ Tests Biased or Unfair?
Many express concern over the relatively lower mean
of the distribution of intelligence test scores of African
Americans, typically about 1 standard deviation (about
15 IQ points) below that of whites (Jencks & Phillips,
1998). Although recent estimates suggest that African
Americans have gained 4 to 7 IQ points on non-
Hispanic whites since 1972 (Dickens & Flynn, 2006),
considerable concern remains as to why differences in
test results exist at all.
The controversy in IQ score differences is fueled
by researchers who argue that IQ is 80% heritable
and therefore largely genetically determined (Rushton
& Jensen, 2006). Other researchers argue that eco-
nomic and social inequality—not test bias or racial
differences—are the simplest explanations for existing
group differences in test performance between African
Americans and whites (Brooks-Gunn, Klebanov et al.,
2003; Nisbett et al., 2012). For example, when personal
and family background characteristics are statistically
controlled for, African American and white children
achieve similar test scores. However, once these students
enter school, the gap between white and African Amer-
ican children grows, which researchers believe may be
due to lower-quality schools in the lower-income neigh-
borhoods where some African Americans live (Cottrell,
Newman, & Roisman, 2015; Nisbett, 2009). A much
higher proportion of African Americans and children
from other ethnic minority groups in the United States
as well as in other countries are poor and have fewer
opportunities for advancement as compared with their
white counterparts. Poverty and inequality are linked
to poor nutrition, inadequate prenatal care, fewer intel-
lectual resources, and similar realities that can have
negative effects on children’s developing intelligence
(White et al., 2016).
Section Summary
Intelligence and Intellectual Disability
● The early history of intellectual disability was plagued by
ignorance and blame.
● By the mid-twentieth century, progress toward under-
standing intellectual disability moved more rapidly, as par-
ents, researchers, politicians, and the public sought better
answers regarding its causes and better ways to assist both
children and adults with ID.
● Intellectual disability refers to limitations in both intelligence
and adaptive behavior. However, many persons with this dis-
order are capable of learning and of leading fulfilling lives.
● Despite its drawbacks, the IQ has become a principal stan-
dard for diagnosing intellectual disability, combined with
other skills and abilities of the child.
128 P A R T 2 Neurodevelopmental Disorders
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FEATURES OF INTELLECTUAL
DISABILITIES
MATTHEW
Gaining at His Own Pace
Matthew was almost 6 years old when he was referred
for a psychological assessment. His brief school record
described him as “developmentally delayed,” and the
school was concerned that his speech and social skills
were very limited. He also had temper tantrums at home,
and his new first-grade teacher had expressed concerns
about his aggressive behavior toward other children in
his class.
I first met with Matt in his home. “Show me some
of your favorite toys or games,” I suggested, unsure of
how comfortable he was with a stranger at his home. He
was a thin boy, with curly hair and a cautious, reserved
expression. He looked me over for what must have been
several minutes while I spoke with his mother and father.
Although he said “OK,” I wasn’t sure he meant it—he
stayed put and seemed uninterested in my request. Matt
had turned 6 a few months ago, but I noticed that his
clothes, games, and vocabulary were closer to those of my
3-year-old daughter. “I don’t want to talk about school
stuff!” he exclaimed, quite loudly, when I asked about his
favorite subjects. “I only like recess and lunchtime—the
stuff they won’t let you do till the bell rings!” There was
a certain degree of truth, and humor, to his statement,
although I don’t think he intended it as such.
Matt became a bit more interested when I brought out
some testing materials. He completed with ease a puzzle
designed for toddlers and was able to make the sounds
of animals in the puzzle. But his emotional expression
remained subdued, with little spontaneous laughter or
joy. He seemed watchful and cautious. “Tell me about
this story,” I said to Matt, holding up a card showing
some animals arguing over a ball. “What do you think
is going on in this picture, and what are the characters,
like the elephant and the zebra, thinking and feeling?”
Matt started right in: “He’s mad ’cuz the zebra grabbed
the ball and ran away with it into the woods. That’s all
I see.” My attempts to elicit more detail were met with
only an inquisitive look.
After a few minutes of this, we took a break and
brought out his toys. “Do you like Harry Potter?”
he asked. We found some common ground among
the characters in the book, and under these “ideal”
conditions, Matt’s communication became more at ease
and spontaneous. He expressed a wide range of emotion
throughout the interview, and settled in to his own
comfortable level of relating. Gradually, his language
production increased as we continued with the more
relaxed play sessions.