Intellectual Disabilities

Oxford Handbooks Online

Intellectual Disabilities  
Johnny L. Matson and Paige E. Cervantes
The Oxford Handbook of Clinical Child and Adolescent Psychology
Edited by Thomas H. Ollendick, Susan W. White, and Bradley A. White

Print Publication Date: Jan 2019 Subject: Psychology, Clinical Psychology

Online Publication Date: Nov 2018 DOI: 10.1093/oxfordhb/9780190634841.013.12

Abstract and Keywords

Intellectual disability (ID) is characterized by significant deficits in intellectual skills and

adaptive behavior. ID affects approximately 1% of the population; an individual’s ID can
range from mild to profound based on the level of impairment and supports needed.
Individuals often present with associated challenging behaviors and medical and
psychiatric comorbidities that create a complicated clinical picture. Comprehensive
assessment is critical for effective treatment. Intervention for ID is focused on addressing
the discrepancies between an individual’s ability and environmental demands by
providing supports to improve daily functioning. A multidisciplinary approach is
necessary. Evaluation and treatment procedures will likely evolve as etiological
understanding of ID improves. Greater research and policy attention to several areas of
clinical practice are needed to improve prognosis and quality of life. This chapter details
diagnostic criteria, assessment and intervention strategies, gaps in and future directions
of research and practice, and implications for clinical practice.

Keywords: intellectual disabilities, global developmental delay, cognitive functioning, adaptive skills, comorbidity

Although our appraisal and conceptualization of intellectual disability (ID) has evolved
tremendously in recent years, accounts of the disorder have been noted since ancient
times. Once thought to be a result of possession by a supernatural being, it was not until
around the eighteenth century that ID was medically defined and individuals with ID were
shown to be able to learn (Cardona, 1994). Since then, there have been notable
improvements in interventions and supports available for individuals with ID,
advancements in the understanding of causes for ID, and significant changes in the
terminology for and classification and definition of the disorder (Schalock, Luckasson, &
Shogren, 2007; Witwer, Lawton, & Aman, 2014). This chapter addresses the diagnostic
characteristics of ID, evidence-based assessment and treatment for ID, gaps in ID
research and practice, future directions of the ID field, and implications for clinical
practice.

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Intellectual Disabilities

Diagnostic Characteristics
Intellectual disability is characterized by significant deficits in both intellectual
functioning and adaptive behavior originating typically before 18 years of age (American
Psychiatric Association [APA], 2013; Witwer et al., 2014). The intellectual functioning
domain is made up of important skills, such as reasoning, problem-solving, planning,
abstract thinking, academic learning, and learning from experience. Intellectual abilities
are typically measured using a standardized intelligence test that results in an IQ score;
however, a low IQ score alone is not sufficient to warrant a diagnosis of ID. This is
especially emphasized in the Diagnostic and Statistical Manual of Mental Disorders, Fifth
Edition (DSM-5; APA, 2013), which moved away from explicit IQ cutoff scores and toward
a classification system based on levels of impairment and support required in everyday
life. Adaptive behavior impairments are (p. 166) characterized by practical, conceptual,
and social skill deficits that affect how well a person functions through daily activities.
Clinical judgment on intellectual and adaptive impairments must be made within the
framework of an individual’s unique cultural expectations for behavior and in relation to
their functioning within their environment without supports (APA, 2013; Witwer et al.,
2014).

The etiology of ID is heterogeneous. Of those individuals with a known cause for their
diagnosis, ID is most frequently due to a genetic syndrome or chromosomal anomalies;
abnormal brain development; prenatal toxin exposure; pre-, peri-, or postnatal
complications; and significant psychosocial deprivation early in life (Shevell, 2008;
Witwer et al., 2014). In the United States, 15–20% of ID diagnoses are associated with
preterm birth (Schieve et al., 2016). Higher rates of ID are found in males compared to
females. Low-income populations also experience higher rates of ID. Factors that
contribute to heightened ID risk in low-income families include increased risk for
exposure to illness, injury, and environmental toxins; inadequate prenatal care;
malnutrition and vitamin deficiencies; and exposure to low-stimulation/disordered
environments (Maulik, Mascarenhas, Mathers, Dua, & Saxena, 2011; Witwer et al., 2014).

Intellectual disability occurs in approximately 1% of the population, but prevalence

differs as a function of level of ID (Maulik et al., 2011; Witwer et al., 2014). Individuals
with ID present with varying degrees of core and associated symptomology. Based on
level of impairment and supports needed, individuals with ID can fall within mild,
moderate, severe, and profound subtypes. Mild ID is the most prevalent subtype (about
85% of the ID population; van Bokhoven, 2011) and is characterized by the mildest
intellectual and adaptive impairments. It is often not diagnosed until school years, when
deficits become more visible and afflicting. Etiology is frequently unclear; a conclusive
metabolic or genetic cause to ID is only identified in about 20% of cases of mild ID (van
Bokhoven, 2011). In addition, typically no physical dysmorphology is involved. Most
individuals with mild ID develop adequate hygiene and self-care skills, can be integrated
into general education classes to some extent, and can hold a job as adults; however,
supports are often necessary, particularly with more complex tasks (e.g., money

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Intellectual Disabilities

management). Socially, individuals with mild ID frequently experience difficulties with

emotional regulation and problem solving (APA, 2013; Witwer et al., 2014).

Moderate ID is defined by more substantial intellectual and adaptive impairments and is

most likely to be diagnosed in the preschool years. Compared to mild ID, moderate ID
more often has an identifiable neurobiological cause; a conclusive genetic or metabolic
diagnosis can be made for 50–65% of individuals with moderate to severe ID (van
Bokhoven, 2011). An increased level of supports is necessary for these individuals to
function within activities of daily living. Because language and academic skills develop
slowly, more significant educational modifications are required for people with moderate
ID. As adults, these individuals often achieve mastery of academic skills at the elementary
level. Socially, language use is simpler than what would be expected given the
individual’s age, and social perception, judgment, and decision-making are deficient.
Employment is possible; however, significant and continuous supports are usually
required (APA, 2013; Witwer et al., 2014).

The severe and profound ID subtypes are reserved for diagnosis of those individuals who
are most affected by the disorder with the greatest level of intellectual and adaptive
impairments. Frequently, these individuals can be diagnosed with ID before or shortly
after birth. Most have an identifiable organic cause to their disorder (e.g., genetic/
congenital disorder, severe birth complications, perinatal infection). Motor and sensory
impairments in addition to comorbid medical conditions (e.g., epilepsy) are more common
within these subtypes. Expressive and receptive language is often limited or lacking.
Social interaction occurs mostly through nonverbal communication; however, individuals
with severe or profound ID can establish relationships with caregivers. Most often,
substantial supports are required throughout life for completion of nearly all activities of
daily living (e.g., eating, dressing, bathing; APA, 2013; Witwer et al., 2014).

Of note, developmental concerns for individuals who are later diagnosed with ID
frequently arise in the early years, prior to when intellectual functioning can be reliably
measured by IQ testing; these children may be first diagnosed with global developmental
delay (GDD; APA, 2013). GDD is a classification reserved for children under the age of 5
years old and is defined by significant delays in two or more areas of development (i.e.,
motor skills, speech/language, social skills, activities of daily living, cognition; McDonald,
2006; Moeschler, Shevell, & Committee on Genetics, 2014; Tirosh & Jaffe, 2011). GDD is
often viewed as a “placeholder” until a child is old enough to be reliably (p. 167) evaluated
and given a more specific diagnosis. Though not all children who receive a GDD diagnosis
go on to have ID, a substantial portion of the GDD population will meet ID diagnostic
criteria later in life (Moeschler et al., 2014; Shevell, 2008; Tirosh & Jaffe, 2011). Notably,
individuals with GDD who go on to be diagnosed with ID typically exhibit delays across all
domains of development (Shevell, 2008).

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Intellectual Disabilities

Associated Symptoms and Comorbidities

A majority of individuals with ID also experience a range of associated symptoms and
comorbidities. Challenging behavior (CB) of varying forms and degrees occurs in more
than half of the ID population; these behaviors can include verbal and physical
aggression, property destruction, tantrums, self-injury, elopement, and a range of
disruptive behaviors (Crocker et al., 2006; Deb, Thomas, & Bright, 2001). Of note, less
than 10% of the ID population has been found to engage in severe forms of CB (e.g.,
those that result in significant bodily injury; Crocker et al., 2006). Significant patterns of
CB presentation have also been found in the research literature. For example, individuals
with mild and moderate ID engage in more verbal aggression than those with severe and
profound ID; individuals with severe and profound ID engage in more physical
aggression, property destruction, and self-injury than those with mild and moderate ID
(Crocker et al., 2006). Because CB is often one of the most influential symptom clusters in
determining appropriate educational, occupational, and residential settings, addressing
CB within clinical practice is imperative (Crocker et al., 2006).

In addition, the likelihood of comorbid psychopathology being present should not be

ignored when working with individuals who display ID. Though exact prevalence
estimates for comorbid psychiatric disorders are difficult to establish due to complexities
in the assessment process (discussed in further sections), it is well accepted that
individuals with ID are at a markedly increased risk for co-occurring neurodevelopmental,
emotional, and conduct disorders (Emerson, 2003; Matson & Shoemaker, 2011). In fact,
Emerson (2003) found that nearly 40% of individuals with ID had a comorbid emotional or
conduct disorder compared to just 8% of peers without ID. When co-occurring
psychopathology is present, prognosis is poorer, with exacerbated social, communication,
and adaptive impairments (Matson & Shoemaker, 2011). Attention-deficit/hyperactivity
disorder (ADHD) is the most common comorbid disorder, with the prevalence rate up to
four times greater in the ID population than in the general population (Neece, Baker,
Crnic, & Blacher, 2013). Autism spectrum disorder (ASD) also overlaps with ID at high
rates. In fact, up to 40% of individuals with ID have been found to meet criteria for ASD
(La Malfa, Lassi, Bertelli, Salvini, & Placidi, 2004). When ASD and ID co-occur, both
autism and ID symptoms are more pronounced, and CB increases and remains more
stable over time; further, there is a higher rate of psychiatric and medical comorbidities
and an increased level of caregiver stress (McCarthy et al., 2010; Peters-Scheffer, Didden,
& Lang, 2016).

In addition, individuals with ID experience substantially more medical difficulties than

their typically developing peers (van Schrojenstein Lantman-de Valk, van den
Metsemakers, Haveman, & Crebolder, 2000). For example, epilepsy, hearing and visual
impairments, and gastrointestinal (GI) and sleep problems are more frequent in children
and adults with ID (Didden, Korzilius, Aperlo, van Overloop, & de Vries, 2002; van
Schrojenstein Lantman-de Valk et al., 1997). The highest risk for comorbid medical
conditions is found in those individuals who have more severe presentations of ID, who
have Down syndrome, and who are adults (i.e., 50 years of age and older; van
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Intellectual Disabilities

Schrojenstein Lantman-de Valk et al., 1997). Some medical problems present in the ID
population are similar to age-related medical conditions in the general population (e.g.,
cardiovascular disorders, diabetes); however, identification and treatment of these issues
are complicated by symptoms of ID. Further, researchers have found that individuals with
developmental disabilities (DDs) such as ID are significantly less likely to receive
appropriate medical care (Peterson-Besse et al., 2014).

Assessment for ID
Assessment for both GDD and ID should begin with gathering a comprehensive history.
Information regarding prenatal, perinatal, and postnatal complications should be
collected and should include medical difficulties during pregnancy; maternal use of
prescription medication, tobacco, alcohol, or illicit drugs during pregnancy; labor and
delivery details (e.g., months of gestation, birth weight); and trauma, illness, or infection
shortly after birth. A complete medical and developmental history as well as information
on the client’s current developmental, intellectual, and adaptive functioning should also
be obtained. (p. 168) Inquiries should be made regarding family history of DDs as well
(McDonald, 2006; Shevell, 2008; Tirosh & Jaffe, 2011). This information can be acquired
through use of clinical interviews, direct observations, and standardized measures of
developmental, intellectual, and adaptive functioning.

Standardized measures used for the assessment of younger children differ from those
used with older children and adolescents. As mentioned, IQ testing is generally avoided in
the evaluation of toddlers and young children. This is due to high levels of variability in
developmental progression and thus a high degree of instability of scores across time.
This instability is particularly true for individuals with less severe presentations of
developmental delay (Witwer et al., 2014). Therefore, although there are no stringent
rules for or against diagnosing young children with ID instead of GDD, the classification
of ID for children under 5 years old is not recommended in milder cases. However,
impairments in children with severe presentations tend to be more stable over time, and
an early ID diagnosis may be justified in these cases. When assessing younger children,
tests of developmental functioning are most frequently administered (e.g., the Bayley
Scales of Infant Development, Third Edition, and the Battelle Developmental Inventory,
Second Edition; Bayley, 2006, and Newborg, 2005, respectively). These tests evaluate
development across multiple domains of functioning (e.g., cognition, adaptive behavior,
language, motor skills, social skills) and allow clinicians to determine if the deficits
present are global or are in isolated areas. There are IQ tests designed for use with very
young children (e.g., Wechsler Preschool and Primary Scale of Intelligence, Fourth
Edition [WPPSI-IV]; Wechsler, 2012) as well; these tests can be used as part of a larger
assessment battery to estimate cognitive abilities during young childhood. To meet
criteria for a diagnosis of GDD, a child must fail to meet developmental milestones
expected for their age within multiple domains. Of note, under the GDD categorization,

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Intellectual Disabilities

children who receive a diagnosis must be reassessed after a period of time, typically at or
shortly after age 5 years old (APA, 2013).

At this reassessment and when assessing older children for ID, clinicians should
administer standardized measures of both intellectual and adaptive functioning. One of
the most popular measures of adaptive functioning is the Vineland Adaptive Behavior
Scales, Third Edition (Vineland-3; Sparrow, Cicchetti, & Saulnier, 2016). The Vineland-3 is
available in both interview and rating-scale formats and relies on caregiver or teacher
report to assess communication, socialization, daily living skills, and motor skills.
Measures of adaptive functioning like the Vineland-3 highlight individual strengths and
weaknesses and identify areas of development that necessitate further evaluation.

In regard to measures of intellectual functioning, there are many available for use.
Several considerations must be made when selecting the most appropriate test for a
given client. Clinicians must consider a client’s age, culture, language, and language
abilities and any barriers for reliable testing that may be present (e.g., CBs, motivational
factors; Ozonoff, Goodlin-Jones, & Solomon, 2005; Schalock & Luckasson, 2004). Each
test has advantages and disadvantages when assessing individuals for ID.

The Wechsler Intelligence Scales for Children, Fifth Edition (WISC-V; Wechsler, 2014) is
one of the most widely used tests of intelligence. The WISC has traditionally been
preferable for use with children who have spoken language due to a higher degree of
verbal requirements for completion (Shah & Holmes, 1985; Ozonoff et al., 2005).
However, the WISC-V was validated for use with special populations, including children
with mild and moderate ID (Miller et al., 2015). The Stanford-Binet Intelligence Scales,
Fifth Edition (SB5; Roid, 2003) can reliably assess a wide range of abilities and ages and
may have more flexibility in administration when compared to the WISC (e.g., can choose
to administer just the nonverbal IQ when testing individuals with limited language). The
Leiter International Performance Scale, Third Edition (Roid, Miller, Pomplun, & Koch,
2013) and the Test of Nonverbal Intelligence, Fourth Edition (Brown, Sherbenou, &
Johnsen, 2010) were both designed for use with populations who cannot be assessed with
more traditional measures of intelligence. These tests are nonverbal and can be
administered without use of any spoken language, making them integral for the
assessment of individuals with more severe deficits. However, overestimation of abilities
may occur when using these tests with certain subpopulations of ID (Shah & Holmes,
1985). Therefore, as stressed within the DSM-5, an IQ score on its own is not sufficient to
obtain a diagnosis of ID. Instead, results of an IQ test should be used as just one piece of
evidence to support clinical judgment regarding an individual’s level of intellectual and
adaptive impairment in daily life.

Once a diagnosis of GDD or ID is established, investigation into the cause of the

(p. 169)

disorder may be warranted. A physical examination to assess factors related to known

etiologies (e.g., dysmorphic features, irregular motor movements) should be conducted by
a medical professional experienced in genetic/metabolic disorders. If this examination
along with information from the clinical interview (e.g., history of familial genetic

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Intellectual Disabilities

disorders) suggest the potential presentation of a specific disorder, more intensive

laboratory tests (e.g., genetic testing, neuroimaging) may be justified. Further, because
diagnostic yield of more recent testing approaches (e.g., chromosomal microarray
analysis) is high for cases of severe ID, clinicians should also consider referring
individuals demonstrating unexplained severe deficits for testing (Sherr et al., 2013).

In regard to pursuing these tests, there are many benefits and potential disadvantages. In
the cases when an etiology is found, a more specific diagnosis may offer a family a
greater sense of validation, more prognostic information, help in obtaining specific
services and support groups, and afford an opportunity for more exact genetic counseling
when discussing future births with caregivers. Further, clinical trials are currently in
progress examining the efficacy of disorder-specific drug treatments targeting the
molecular basis of specific genetic etiologies of ID (Sherr et al., 2013; van Bokhoven,
2011). On the contrary, many cases of ID and GDD (particularly for children with less
severe presentations) do not have a discernible etiology. These tests are expensive and
can be stressful on the child and the family to carry out. Therefore, clinicians should
ensure more extensive etiological testing is warranted before making referrals
(McDonald, 2006; Moeschler et al., 2014; Shevell, 2008; Tirosh & Jaffe, 2011).

Last, best practice in the assessment of the ID population would be to ensure that
individuals are receiving continued assessment through the lifespan at specified points in
development. Variability in intellectual and adaptive functioning throughout one’s lifetime
is common, and treatment should be informed by the periodic assessment of an
individual’s current strengths and weaknesses. Therefore, a single diagnostic assessment
for ID would be inappropriate (Shevell, 2008).

Assessment of Associated Symptoms and

Comorbidities
Because CBs (e.g., aggression, property destruction, self-injury) are best treated with
function-based behavioral interventions, the assessment of CBs should focus on
identifying maintaining environmental variables through functional assessment. Common
functions of behavior are attention, escape from demands, access to tangibles, and
automatic reinforcement (Tarbox et al., 2009). There are various methodologies available
for discerning the function of CB. Indirect functional assessment involves interviewing
caregivers who have experience with the client and their CB or administering informant-
report measures like the Questions About Behavioral Function (QABF; Matson & Vollmer,
1995). Indirect functional assessment through interview or measures like the QABF can
be completed quickly and is relatively easy to carry out; however, the function of behavior
can only be hypothesized because there is no direct observation or manipulation of
conditions. Descriptive functional assessment involves direct observation of the CB and
measurement of any significant environmental variables surrounding the CB. Advantages
include the ability to observe the behavior in the natural environment and the opportunity
to track a number of variables that may be relevant. Disadvantages include the training
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Intellectual Disabilities

required to accurately assess antecedents and consequences, the possibility that CB may
not occur during observation time, and the correlational results of the assessment.
Experimental functional analyses (EFAs) involve directly manipulating environmental
conditions to determine the function of CB. This procedure is considered the most
accurate; however, it is time, cost, and labor intensive; temporarily exposes children to
conditions that make potentially dangerous CB more likely; and is scarcely used within
clinical settings (Tarbox et al., 2009).

The assessment for comorbidities is less clear, and diagnosis of psychopathology is

difficult for several reasons. The first is the potential for diagnostic overshadowing;
clinicians often overlook the possibility for dual diagnosis and attribute symptoms of co-
occurring disorders to the presence of ID (King, Ollendick, Gullone, Cummins, & Josephs,
1990). Further, psychopathology presents differently in individuals with more severe
presentations of ID. Due to difficulties in cognition and communication, more traditional
assessment methods would be inappropriate. Even in individuals with more mild or
moderate presentations of ID, impairments in relaying subjective experiences and
discussing abstract concepts may create sizable barriers to accurate evaluation.

Currently, best practice for assessing psychiatric conditions in the ID population involves
interviewing individuals (if possible) and their caregivers about symptom
(p. 170)

presentation and the contexts in which symptoms occur, administering self- and/or
informant-report measures valid for use with individuals with ID, and, most importantly,
conducting behavioral observations to identify any nonverbal indicators of
psychopathology (e.g., lack of interest in activities, emotional lability; King et al., 1990;
Matson & Shoemaker, 2011; Witwer et al., 2014).

Similarly, the assessment of medical conditions is challenging due to a reliance on

behavioral indices of pain (due to impairments communicating symptoms) and difficulties
achieving cooperation with examination procedures (e.g., blood tests). Standard medical
practices are often inadequate for the care of individuals with more severe presentations
of ID. However, medical comorbidities that go unnoticed and untreated can greatly
reduce an individual’s quality of life and may result in more serious conditions later (van
Schrojenstein Lantman-de Valk et al., 1997). Therefore, an increased understanding of
health risks and medical needs of individuals with ID and the development of more
appropriate assessment procedures should be a focus of future research and clinical
work. At present, a multidisciplinary team (MDT) approach is paramount in the
assessment and treatment of medical comorbidities of the ID population.

Treatment of ID
The general goal of treatment for ID is to first identify the discrepancies between a
person’s skill level and the demands in their environment and then provide necessary
supports to enable improved functioning within their daily life. Because skill level and
environment vary from person to person, treatment of ID should be individualized
(Thompson et al., 2009). However, prior to discussing interventions for individuals, the
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importance of providing family supports within the evidence-based treatment of ID should

be addressed. Families of children with ID, specifically those of children with ID and
associated CBs, are at increased risk for stress (Hassall, Rose, & McDonald, 2005).
Further, not only do mothers of children with ID experience higher rates of depression
(Olsson & Hwang, 2001), but parental depression (particularly in fathers) together with
the implementation of unsupportive parenting practices may lead to an increase in
internalizing behaviors in children with ID (Rodas, Zeedyk, & Baker, 2016). Therefore,
following diagnosis of ID, clinicians should be available to provide psychoeducation to
caregivers, to help in reevaluating parental goals for their child, and to aid in the
identification of appropriate resources. Particularly in need of clinician attention and
support are families of children with ID who have fewer social supports, who have
parents affected by intellectual deficits or mental illness, and who are living in poverty
(Guralnick, 2005).

In regard to treatment of the individual with ID, interventions should begin as soon after
developmental deficits are identified as possible. Children who receive early intervention
(EI) have been shown to have better outcomes than children who do not receive EI or
who start treatment after the age of 5 years (Witwer et al., 2014). The goal of EI is to
place young children exhibiting intellectual impairments on a more typical developmental
trajectory and to prevent any associated symptoms and comorbid disorders that
frequently occur with ID (Guralnick, 2005). Effective EI includes treatment that is
individualized, is provided at high intensities, and is directly implemented with the child.
Various services are often necessary to promote more positive outcomes (e.g., parent
training, occupational therapy [OT], speech therapy [ST], social work services; Tirosh &
Jaffe, 2011; Witwer et al., 2014). However, researchers have found that ongoing supports
are essential to maintain gains after EI is terminated (McCarton et al., 1997; Witwer et
al., 2014).

When a child ages out of EI services and enters school, individualized supports will be
needed to ensure progress is made. The educational curriculum should be modified as a
function of the child’s level of impairment and skills level. For example, the education of
individuals with more severe and profound ID may need to focus on mastering important
basic daily living skills (e.g., toileting, feeding). Children with moderate ID may require
more complex activities of daily living needed for greater independence (e.g., cooking,
social skills, vocational skills) in addition to basic academics. Education of children with
mild ID may more heavily emphasize the acquisition and mastery of academic skills
(Kauffman & Hung, 2009). Delivery of instruction should also be individualized with
respect to the rate and intensity of instruction, the structure of the academic
environment, the student-to-teacher ratio, the progress-monitoring strategies used, and
the reinforcement schedules in place. Of note, there was a significant push for the
inclusion of students with (p. 171) disabilities into general education classes in the field of
special education. However, decisions on placement should also be individualized; it is
now more widely recognized that inclusion is not appropriate or feasible for some
children who would be more effectively taught in alternative settings (Kauffman & Hung,
2009). To force inclusion would be doing these children a disservice. In the United States,
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Intellectual Disabilities

these procedures, accommodations, and educational goals should be outlined in a

student’s Individualized Education Program (IEP). When an individual with ID reaches
adolescence and adulthood, planning for future vocational and residential options is
imperative. This transition planning should be conducted with the individual’s IEP or
child study team prior to graduating from school services (Grigal, Hart, & Migliore,
2011).

Throughout the life course, individuals with ID often require the care of a MDT to
intervene on ID symptoms, associated symptoms, and symptoms of comorbid disorders. It
is not uncommon for children with ID to receive ST, OT, and physical therapy (PT) in or
out of school to target motor, speech, and daily living skill deficits. Behavioral
interventions may also be important for both addressing adaptive skill deficits and
treating CBs and comorbid disorders. In regard to targeting adaptive skills, behavioral
strategies work to improve both skill and motivational deficits. Skill acquisition is
promoted using strategies like discrete trial training, modeling, prompting, and shaping.
Motivational deficits may be mediated by building in reinforcement-based systems for
engaging in target behaviors.

As stated, CBs should be treated with function-based behavioral interventions. This often
involves teaching the client a functionally equivalent but more appropriate behavior to
replace their CB. Differential reinforcement of the replacement behavior or of a behavior
other than the target CB may then be employed as well. As punishment often leads to
faster cessation of behavior, the implementation of punishment strategies may be
warranted in cases of severe CB (e.g., dangerous self-injury or aggression). Clinical
judgment and careful ethical considerations are necessary in these instances (Matson &
Shoemaker, 2011).

Comorbidities may also be treated with psychosocial therapies but require thoughtful
adaptations to evidence-based approaches used within the general population. This
method is used because there is limited direct evidence for the effectiveness of common
approaches used with individuals without ID (e.g., cognitive behavioral therapy for
anxiety) for the ID population (Dagnan & Jahoda, 2006). Treatment of psychopathology in
individuals who are less impaired by ID may be identical to that of individuals without ID;
however, social deficiencies (e.g., emotional dysregulation, social problem-solving
deficits) may impede effectiveness if not accounted for in treatment planning. When
working with individuals who are more affected by ID, significant difficulties with
communication, socialization, and cognition may restrict the ability to apply common
psychosocial treatments. Behavioral treatments that require less cognitive insight and
communication may be effective in these cases.

Psychiatric comorbidities and severe cases of CB in ID are frequently treated with

psychotropic medications. When using pharmacological interventions, it is important to
systematically measure not only effectiveness (i.e., reduction of intensity or frequency of
symptomology) but also side effects. Particularly in individuals with ID who already
exhibit memory, learning, and motor deficits and who have comorbid medical problems,

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collecting data on the exacerbation of these difficulties, on sedation, and on more serious
neurological effects should be a priority (Matson & Shoemaker, 2011).

Case Example
Joe Smith was the product of a difficult pregnancy; he was born prematurely and of low
birth weight. However, after an extended stay in the neonatal intensive care unit, he
appeared to have made significant gains medically and was cleared to go home with his
mother. As Joe grew older, his mother became increasingly concerned regarding his
development. At his 18-month visit to the pediatrician, Ms. Smith reported that he had
not yet met typical motor and communication milestones. Joe’s pediatrician referred him
for an evaluation with his state’s EI program to determine his eligibility for EI services.
Joe was administered the Bayley and scored in the extremely low or low range on four of
the five subscales. Results of this developmental testing in addition to observations and
clinical interview supported a diagnosis of GDD at the time. The physical exam conducted
thereafter was unremarkable for dysmorphic features, and family history was
insignificant for genetic syndromes; Ms. Smith did not pursue additional etiological
testing.

Joe began receiving in-home ST and OT multiple times per week through the EI program.
He (p. 172) was also engaging in significant tantrums at the time, so his mother sought
parent training using behavior therapy. Joe responded well to treatment. By 3 years old,
when he was transitioning from EI to school services, he had made gains in motor and
language domains and had less significant CB. However, he was still considerably behind
other children his age. Joe transitioned from EI services to an intensive preschool
program and then to a special education kindergarten class. He and his family received
ongoing supports from a MDT through this time, and the supports Joe required were
periodically assessed by his IEP team.

Because GDD is a temporary diagnosis, Joe was reevaluated with a comprehensive

assessment battery in the first grade. At the time, he spoke most often in three-word
phrases and simple sentences; so, he was administered the complete SB5. He scored a
47. Ms. Smith was interviewed to gather information on developmental, medical, and
family history and on Joe’s current functioning; she was also administered the Vineland.
Joe scored in the low range across all adaptive behavior scales. Joe’s teacher was
interviewed as well and noted similar delays in academic and adaptive skills in addition to
inattention and frequent disruptive behaviors. Symptoms of inattention and hyperactive
and impulsive behavior were also endorsed by Ms. Smith and observed in session.
Therefore, standardized informant-report measures of ADHD were administered to Joe’s
teacher and mother, and direct observations of Joe in various settings were conducted.
Due to the frequent overlap between ID and ASD, efforts toward differential diagnosis
were taken. Joe’s social deficits were not in excess of what would be expected given his
intellectual impairments; he also did not display repetitive behaviors or restricted
interests.

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Therefore, following a comprehensive evaluation, Joe’s GDD diagnosis was replaced with
a diagnosis of moderate ID. He was also given a diagnosis of ADHD, combined
presentation, as his inattention and hyperactivity symptoms were beyond what would be
expected given his ID symptoms. Ms. Smith was provided with psychoeducation. A
recommendation was provided for his mother to return to parent training to learn
behavioral strategies for ADHD symptoms. Behavioral supports targeting ADHD were
also added to Joe’s school services. The importance of periodic assessments through the
life course was emphasized.

With a clearer understanding of Joe’s deficits and needed supports, he progressed

through first and second grade. In third grade, behavioral supports for ADHD symptoms
appeared inadequate, and Ms. Smith was referred to a psychiatrist. Joe was prescribed
stimulant medication. Though several different medications were trialed, Joe’s
psychiatrist was able to find the best fit through excellent care coordination; Joe’s
mother, treatment providers, and teachers all systematically monitored the effectiveness
and side effects of each medication. With Joe’s ADHD symptoms properly treated, he was
able to excel further in basic academic and adaptive skills. Though he would never
achieve the level of ability of typically developing peers, Joe was able to acquire very
meaningful skill sets that encouraged independence (e.g., cooking, laundry, basic math
skills). He continued to receive ST and OT as well.

When Joe was approaching graduation age, he, his mother, and his IEP team met for
transition planning. After high school, Joe began a day rehabilitation program near his
home and continued to work on vocational skills. In terms of residential options, Joe
continues to live with his mother. Looking toward the future, Ms. Smith is struggling with
the decision on whether Joe’s younger brother will provide care for Joe or if Joe will live
in a group home setting. Given the difficulty of this decision, Ms. Smith was referred to a
social worker to help in exploring options for residence and providing resources and
support for Ms. Smith and Joe.

Challenges, Recommendations, and the Next

Frontier
Because individuals with ID, particularly those with more severe presentations, have
large and varied healthcare needs, care coordination is of the utmost importance. People
who receive treatment from a team of professionals who each contribute unique expertise
and recommendations for achieving shared intervention goals have been shown to have
better outcomes (Witwer et al., 2014). When an individual with ID is school-aged, care
coordination is more readily achieved as school acts as the main loci for service provision.
However, care coordination is more difficult to achieve when individuals are not yet or
are no longer in school. Further research and policy efforts should be made regarding
improvements in this area.

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Relatedly, individuals with ID have high rates of unmet service needs. Given the
complexity of psychiatric and medical comorbidities in ID, more specialized training for
both medical and mental health professionals working with this population is necessary
(Werner & Stawski, 2012). Many (p. 173) existing medical procedures are inadequate to
serve individuals more affected by ID, which in turn leads to undetected conditions (van
Schrojenstein Lantman-de Valk et al., 1997). Greater specialization in the ID field may
lead to increased understanding of these complicated medical needs and thus much
needed improvements in medical procedures. Similarly, there has been a recent push for
alternative conceptualizations of psychiatric disorders in the ID population to improve
existing assessment strategies. This approach may prove integral given that diagnosis
currently relies heavily on observable behaviors due to difficulties in communication,
cognition, and socialization (Bradley, Summers, Wood, & Bryson, 2004). Achieving
greater clarity regarding psychiatric comorbidities in ID is necessary for improved care in
the future.

Efforts to improve medical and psychiatric care will be increasingly important given the
significant increases in life expectancy across the ID population (Bittles et al., 2002). In
addition, greater attention will need to be devoted to adult employment outcomes.
Currently, a minority of the DD population is engaged in paid work, and an even smaller
minority holds individual positions where they are paid minimum wage or more. Post-
school goals for individuals with ID are most frequently goals of supported or sheltered
employment; these work situations may pay subminimum wages, are often less
integrated, and have not led to improved employability (Grigal et al., 2011). Therefore,
greater emphasis should be placed on care coordination during transition planning
between members of an IEP team and professionals of adult care agencies. These
professionals can use their expertise proactively to connect individuals to relevant
community and work resources and encourage more integrated work placements (Grigal
et al., 2011). Of note, greater vocational rehabilitation services are available to promote
success in more competitive job environments. For example, there is an emerging area of
research indicating support for the use of mobile devices (e.g., iPod Touch) to improve
vocational and other outcomes; within vocational settings, common uses of mobile
devices are for video modeling and self-prompting of job responsibilities (Stephenson &
Limbrick, 2015).

Last, with advances in technology such as whole-genome sequencing and neuroimaging,

neurobiological mechanisms that underlie ID will continue to be identified (Ellison,
Rosenfeld, & Shaffer, 2013); changes in how we assess, conceptualize, and treat ID will
likely result from this research. Further, future research will advance our understanding
of how the environment interacts with biological predispositions to lead to ID (Guralnick,
2005); this line of work may aid in improving prevention efforts. Similarly, researchers
have begun to identify biomarkers for certain behavioral presentations (e.g., self-injury)
in ID (Symons, Wolff, Stone, Lim, & Bodfish, 2011). When biomarkers are identified,
treatment can begin to be provided, proactively targeting these presentations. The field
has also progressed in our understanding of behavioral phenotypes for common genetic
disorders that lead to ID (Hodapp & Dykens, 2012; Witwer et al., 2014). This information
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Intellectual Disabilities

provides greater prognostic information and again aids in proactive efforts toward
improving outcomes.

Implications for Clinical Practice

The first step toward intervening on ID would be improving existing prevention
strategies. Ensuring safe delivery practices, swift identification and treatment of
postnatal infections, and improved prenatal and postnatal maternal and child health
would aid in evading common causes for ID (Maulik et al., 2011). For example, greater
efforts toward improving prenatal care may decrease rates of preterm birth (Vintzileos,
Ananth, Smulian, Scorza, & Knuppel, 2002). Given the significant relationship between
preterm birth and ID, these improvements will likely reduce the prevalence of ID (Schieve
et al., 2016). In addition, children born at risk for cognitive impairments, such as those
children born preterm, should be closely monitored; developmental assessment should be
conducted throughout childhood to allow for early identification and intervention.
Optimizing environments post-birth for all children is also critical; psychoeducation and
training for new parents on the importance for their child of an enriched environment
with stimulating toys, a lot of language use, and quality parent–child interactions may
help in this area (Guralnick, 2005).

In regard to clinical services for individuals who have been diagnosed with ID, it is clear
that multidisciplinary supports should be present throughout life. Periodic assessment
over time is also imperative, particularly given high rates of comorbid disorders. Although
efforts toward advancing evaluation of co-occurring medical and psychiatric disorders are
under way, it is important that clinicians be cognizant of the effects of ID on symptom
presentation as well as on accurate assessment. Given a person’s functioning level, a
range of accommodations may be necessary for the detection of medical conditions
(p. 174) and psychopathology. Similar to the variability in adaptive and intellectual deficits

across the lifespan, symptoms and risk for developing comorbidities likely vary as a
function of developmental period. For example, prevalence of depression, visual and
hearing impairments, GI problems, and cardiovascular disease in the ID population has
been found to increase with age (Emerson, 2003; van Schrojenstein Lantman-de Valk et
al., 1997). Therefore, clinicians should also be aware of what to screen for when
assessing clients at different stages of life.

Treatment should then be informed by assessment results, should be evidence-based, and

should take the unique goals and needs of each individual client into account. Supports
provided should work to improve individual outcomes related to independence,
relationships, school and community participation, and personal wellbeing (Schalock &
Luckasson, 2004). Treatment targets should be developed by a MDT and directed by the
goals and values of the individual and their family. As such, cultural considerations should
be made to ensure that the goals of the professional team align with those of the client.
Last, given the enduring nature of ID, supports for caregivers should also be available
through the lifespan. Varying depending on ID severity, caregivers of individuals with ID

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are faced with the responsibility of making many complicated decisions regarding
appropriate school placements, intervention services, employment options, residential
situations, and the like. Therefore, professionals in the field should be accessible to help
in guiding these caregivers to make well-informed choices.

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Johnny L. Matson

Johnny L. Matson Department of Psychology Louisiana State University Baton Rouge,

LA, USA

Paige E. Cervantes

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Paige E. Cervantes Department of Psychology, Louisiana State University, Baton

Rouge, LA, USA

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