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84 Chapter 5 Disorders of Early Childhood
Etiology
Much of what is known about the etiology of disorders of attachment is based on what we know about the development of insecure patterns in typical and at-risk children. According to Zeanah and Smyke (2009, p. 421), “[t]he propensity for human infants to form selective attachments is believed to be so strong that only in highly unusual and maladaptive caregiving environments do attachments fail to develop. For infants raised in species-at ypical rearing conditions, however, seriously disturbed and developmentally inappropriate ways of relating may evolve. Examples of atypical environments include institutions (i.e., orphanages), frequent changes of caregivers (as sometimes happens in foster care), neglectful or abusive caregivers, or being raised by insensitive or unresponsive caregivers.”
For both RAD and DSED, the role of caregiving (i.e., caregivers and the caregiving environment) is primary. Neglectful and abusive caregiving leads to insecurity and disorders of attachment, with more neglect and more abuse associated with increasingly negative outcomes. Extremely adverse caregiving environments include institutions and problematic foster care and home settings that are characterized by chronic maltreatment and domestic violence (Zeanah & Gleason, 2015). “Institutional rearing due to its regimented nature, high child-to-caregiver ratios, multiple shifts, and frequent changes of caregivers almost inevitably deprives children of reciprocal interactions with stable caregivers” (Steele & Steele, 2014, p. 363).
Distinctions between adverse caregiving characterized by trauma (such as maltreatment) and adverse caregiving characterized by deprivation (such as neglect) provide important information (Guyon-Harris et al., 2021). Young children may experience exposure to “low deprivation/ low threat (e.g., safe and stimulating environments), high deprivation/low threat (e.g., severe neglect and institutional rearing), low deprivation/high threat (e.g., exposure to violence and abuse), and high deprivation/high threat (e.g., complex exposures)” (Guyon-Harris et al., 2021, p. 88; McLaughlin et al., 2014). These different adverse caregiving environments may lead to different disorders or combinations of disorders over time.
Children with disorganized attachments are more likely to develop DSED (Zeanah & Gleason, 2015). Disorganized attachments are associated, as noted earlier in the chapter, with frightening, frightened, and/or dissociative parenting behaviors. They may also occur in parent-child pairs where the parent experienced significant loss or trauma or as a result of long or repeated separations from the caregiver. Infant genetic predispositions and temperament dimensions may also contribute to disorganized attachments (Granqvist et al., 2017). With respect to genetic influences on children’s disorders of attachment, results from various investigations suggest increased differential susceptibility to poor parenting (i.e., insensitivity and/or frightening or other atypical behavior) (Drury et al., 2011; Zeanah & Gleason,
2015).
Remember, however, that not all children living in adverse environments or experiencing problematic care develop attachment disorders. We need to consider other risk factors that help explain the most maladaptive pathways. Reviews of parent factors that increase risk for attachment disorders include personality and psychopathology, attachment history, and other contextual variables. Mental illness in parents has received a lot of attention. Maternal depression, bipolar disorder, anxiety, substance abuse, and schizophrenia have all been associated with greater frequency of insecurity and attachment disorders in children. Neglectful and abusive caregiving also may occur in the context of chronic interparental conflict, hostility, and violence (Cummings & Miller-Graff, 2015; Davies & Martin, 2013).
Assessment and Diagnosis
In contrast to much of the research-oriented assessment of attachment in typical and at-risk samples of young children, the clinical assessment of disorders of attachment involves more naturalistic data collection. Home visits or assessments in home-like settings are preferable, and in some cases may be necessary. Parent reports and observations are an important source of information (Zeanah & Gleason, 2015).
Perhaps the most important contributions to the accurate assessment of disorders of attachment are observations of the child in the everyday environment. For reactive attachment disorder, clinical interpretations of real-life caregiver–child interactions are essential for understanding the dynamics of attachment (and the absence of attachment behaviors). For disinhibited social engagement disorder, observation of the child in multiple social settings is essential. In the clinical cases presented earlier in the chapter, direct observation of the children contributed to making the correct diagnosis.
In terms of ass essments that identif y risk factors a ssociated with early and later maladaptation, clinicians may choose to include measures of irritability (Wakschlag et al., 2015). To better design interventions, assessments of caregiver history and functioning (focused on parent risk factors that increase risk for attachment disorders) may also be useful.
Although much of the research and clinical attention currently paid to disorders of attachment is focused on young children, many instances of these disorders are identified and assessed in older children. With increasing age, it becomes more important to develop a therapeutic alliance with a child or adolescent to make an accurate diagnosis and design an appropriate intervention. Older children and adolescents often exhibit multiple problems, including aggression, anxiety, and depression, with a number of children meeting the diagnostic criteria for several disorders. Some of these disorders have their etiological roots in disorders of attachment, and others do not. A comprehensive assessment—whether simple and straightforward or messy and complicated—will always keep the child in full view.
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Disorders of Attachment 85
Intervention
Within the f ramework of de velopmental psychopat hology, it is both theoretically and practically easier to prevent the development of disorders than it is to intervene effectively once disorders are in place. Children, parents, and mental health professionals, however, must deal with real-life circumstances. And real life requires that we design and validate therapeutic interventions for disorders of attachment. Keep in mind as well that prevention strategies and attachment-related interventions to improve young child-caregiver relationships also serve to decrease risks for later disorders of childhood and adolescence.
Prevention strategies related to disorders of attachment can be usefully categorized as universal measures for the general population, selective measures for groups at above­average risk, and indicated measures for groups with specific risk factors that require more extensive help. Examples of universal measures designed to promote infant and parent well-being are infant and toddler education programs delivered before and after the baby is born.
Examples of selective measures to enhance child, parent, and family well-being include those provided to caregivers at high risk for maltreatment. The Attachment and Biobehavioral Catc h-up (ABC) progra m is a brief inter vention that targets three key behaviors: providing nurturant care when children are distressed, following children’s leads when they are not upset, and not exhibiting frightening behavior. Caregiving coaches provide immediate feedback to parents in therapy sessions. Young children whose parents participated in the program displayed more secure and more organized attachments (Dozier & Bernard,
2017).
Another example involves the early identification of families where parents experienced their own less­than-adequate care. Treatments are offered that disrupt intergenerational cycles of abuse by providing education and support for positive parenting (Granqvist et al.,
2017). In many of these prevention and intervention approaches, it is important to recognize that the parent-therapist alliance is critical for engagement and good outcomes. Blaming parents, especially for parenting behaviors that are not always intentional and not always malicious, is counterproductive (Granqvist et al., 2017).
With respect to therapeutic approaches for children already diagnosed with reactive attachment disorder or disinhibited social engagement disorder, meaningful improvement depends on the duration and degree of disorder, particular etiology, age of the child, and the scope of environmental change. “The first priority of treatment is to establish a safe and stable caregiving environment with a warm and consistent caregiver,” with the goals of enhancing adaptive behaviors and decreasing maladaptive behaviors (Zeanah & Smyke, 2009, p. 429).
Indeed, with adoption or positive foster placements, children with RAD display significant improvement; symptoms diminish or disappear in sensitive caregiving environments. The symptoms of DSED are more persistent, so children with that disorder require additional treatment components beyond enhanced caregiving (Zeanah & Gleason, 2015).
Attachment-informed interventions such as Child­Parent Psychotherapy (CPP) have received a lot of empirical support. CPP includes therapy sessions with caregivers and children focused on protective caregiving and replacing maladaptive beliefs that parents have about children with more realistic and positive beliefs (Lieberman et al., 2015). Video-feedback components and interventions provide very specific information about what caregivers are doing well and what they might do differently (Juffer et al., 2017). Group-based attachment interventions have also received empirical support. The group format provides additional benefits such as decreasing families’ isolation and promoting positive change (Murphy et al., 2015).
Other interventions are focused on increasing caregivers’ capacities and skills related to mentalizing, the ability to understand the self and others in terms of feelings, thoughts, needs, motives, and goals. Mentalizing interventions support caregivers’ positive connections to young children. Their strengthened appreciation of children’s inner states and inner worlds improves sensitive caregiving and secure base provision (Luyten et al., 2020).
Another perspective on promoting the availability, consistency, and quality of caregiving involves levels of adverse contexts and interventions (Humphreys et al., 2021, refer to Figure 5.6). Interventions for children without caregivers involve family placements. Interventions for children with inconsistent care involve addressing barriers to better care such as violence prevention measures and treatments for parental substance use or mental illness. Interventions for children with ineffective care involve caregiver-focused treatments such as attachment and behavioral catch-up and child­parent psychotherapy.
It is absolutely critical to state that attachment holding interventions have been “completely discredited as dangerous, unethical, and importantly, also ineffective” (Guyon-Harris et al., 2021, p. 91; Chaffin et al., 2006).
Treatments also are provided to adolescents who were maltreated as children. For adolescents in foster care, the development of an attachment relationship with a foster parent predicts fewer externalizing problems. It is encouraging that there is still “substantial potential for maltreated children to change and develop subsequent secure attachments in adolescence” (Joseph et al., 2014, p. 67). Other clinical research confirms that hard-to-reach adolescents are able to make important connections to therapists using attachment-based strategies that support their therapy goals (Bevington et al., 2015).
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86 Chapter 5 Disorders of Early Childhood
Key Terms
Temperament (68) Reactivity (68) Regulation (68) Differential susceptibility (71) Resistant (anxious/ambivalent) attachment (72)
Chapter Summary
The mental health and well-being of infants, toddlers, and young children requires that we identify and respond to patterns of distress and dysfunction in early development.
Physiological systems, including the important sleep system, undergo changes in the early years with meaningful consequences for typical and atypical development.
Temperament is best understood as dimensions or profiles of activity, affectivity, and self-regulation. Temperament is reliably related to later personality and contributes to pathways of adaptation and maladaptation.
The development of a secure attachment relationship between infant and caregiver is the critical task in the first year of life. Secure attachment relationships are the result of consistent, appropriate responsiveness by the caregiver to the infant’s physical, emotional, and social needs.
Insecure attachments—including resistant, avoidant, and disorganized attachments—reflect inconsistent, ineffective, and/or inappropriate caregiving.
Attachment processes and caregiving environments are associated with a wide range of physiological, psychological, and social outcomes across development.
Problematic patterns of temperament and attachment often reflect significant distress and dysfunction but do not necessarily lead to a diagnosis. These early patterns may be usefully understood as risk factors for ongoing difficulties and later disorders.
Avoidant (anxious/avoidant) attachment (73) Disorganized attachment (73) Irritability (75) Avoidant/restrictive food intake disorder (ARFID) (76) Sleep–wake disorders (78) Reactive attachment disorder (RAD) (80) Disinhibited social engagement disorder (DSED) (80)
Irritability, involving negative mood and intense dysregulation, helps explain some of the connections between early patterns of distress and dysfunction and later disorders.
Feeding di sorders represent an impa irment of efficient and effective feeding—an especially salient developmental task in infancy and early childhood. Multiple factors contribute to feeding difficulties. Behavioral and relationship interventions are effective in improving outcomes.
The sleep-wake disorders most common in early development are those that involve significant difficulties falling or staying asleep. Multiple factors contribute to sleep-wake disorders. As with feeding disorders, behavioral and relationship interventions are effective in improving sleep and sleep outcomes.
DSM-5-TR describes two kinds of attachment disorders: reactive attachment disorder (RAD) and disinhibited social engagement disorder (DSED).
Severely adverse caregiving environments, such as those related to institutionalization, maltreatment, and/or neglect, contribute to the development of disorders of attachment.
Interventions for disorders of attachment range from universal measures for the general population to more selective measures that target more specific risk factors and high-risk groups.
There are several effective relationship-based treatments for disorders of attachment, with a focus on providing children with sensitive caregiving and positive parenting.
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6
Intellectual Developmental Disorder and Learning Disorders
Chapter Outline
Developmental Tasks and Challenges Related to Intelligence and Cognition 88
Components and Mechanisms of Intelligence Cognitive and Intellectual Functioning across Development Genes, the Brain, and the Environment Measures of Intelligence
Intellectual Developmental Disorder 91
The Case of Katherine Zigler’s Developmental Approach to Intellectual
Developmental Disorder Genotypes and Neurobehavioral Phenotypes Down Syndrome Williams Syndrome Fragile X Syndrome Fetal Alcohol Spectrum Disorder
Etiology 95 Developmental Course 96
Language, Communication, Executive Function, and Learning Socioemotional Functioning, Motivation, and Personality
Box 6.1 The Child in Context: Enhancing Success in
Inclusive Classrooms
Learning Objectives
Maladaptive Behavior and Comorbid Disorders Adult Outcomes The Role of the Family Risk and Resilience
Assessment and Diagnosis 100
Assessment of Intellectual Functioning Assessment of Adaptive Functioning Other Assessment Concerns
Intervention 101
Genetic Screening and Prevention Strategies Pharmacological Treatment Psychological Treatment Family Education and Support
Learning Disorders 103
The Case of Ethan
Developmental Course 105 Etiology 105 Assessment, Diagnosis, and Intervention 106
1. Summarize the major models of intelligence and its components.
2. Summarize the ways in which cognition and intelligence develop over time.
3. Discuss the ways in which genetic, brain, and environmental factors influence intelligence over time.
4. Describe the ways in which intelligence has been measured over the past century.
5. Discuss the constructs of intellectual functioning, adaptive functioning, and quality of life in relation to intellectual developmental disorder.
6. Explain Zigler’s developmental approach and its impact on the current understanding of intellectual developmental disorder.
7. Compare and contrast two types of intellectual developmental disorder with specific etiologies.
8. Summarize various family influences on the development of intellectual developmental disorder.
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9. Compare and contrast varied developmental pathways for youth with intellectual developmental disorder, including information about language and communication, socioemotional functioning and relationships, and long-term outcomes.
10. Summarize the main assessment techniques for intellectual developmental disorder.
11. Summarize approaches to prevention and intervention for intellectual developmental disorder.
12. Explain the main findings related to cognitive models of learning disorders.
13. Compare and contrast a positive developmental pathway and a problematic developmental pathway for two youths with learning disorders.
14. Summarize the assessment techniques and interventions for learning disorders.
87
88 Chapter 6 Intellectual Developmental Disorder and Learning Disorders
Children with intellectual developmental disorder have been the causes of bewilderment, the targets of ridicule and institutionalization, and the focus of many adults’ love and care. A ny historical perspective on intellectua l developmental disorder must include the centuries of mistaken, harmful beliefs and useless, sometimes cruel interventions. Historical perspectives must also include the longstanding concern and support for children with intellectual disabilities displayed by parents, teachers, and medical and mental health professionals. Contemporary, holistic approaches to understanding intellectual developmental disorder and the very diverse group of individuals who share that diagnosis are the focus of this chapter.

Developmental Tasks and Challenges Related to Intelligence and Cognition

Theoretical models and empirical studies emphasize the need to understand the complex construct of intelligence and its contribution to typical and atypical development across cultures and in a variety of settings (Pennington, 2015; Sternberg, 2019). We know that cognitive and intellectual development predicts academic, work, and health outcomes across the lifespan. Intelligence is linked with school success and educational achievement, job performance, and better health and a longer life (Deary, 2021).
The following summaries are organized around several key issues: (1) What are the underlying components and mechanisms of intelligence? (2) How does cognitive and intellectual development unfold over time? (3) What are the roles of genes, brain structure and function, and the environment in the development of intelligence? (4) How do we measure intelligence?
Components and Mechanisms of Intelligence
The most basic question involves the nature of intelligence. This definition has been used by many researchers for a long time: “[Intelligence] ... involves the ability to reason, plan, solve problems, think abstractly, comprehend complex ideas, learn quickly and learn from experience. It is not merely book learning, a narrow academic skill, or test-taking smar ts. Rather it reflects a broader and deeper capability for comprehending our surroundings—‘catching on,’ ‘making sense’ of things, or ‘figuring out’ what to do” (Gottfredson, 1997, p. 13).
Researchers agree that intelligence involves the performance of mental tasks, including adaptation to one’s environment, learning, reasoning, problem solving, and planning. Many models of intelligence emphasize the verbal and mathematical abilities or skills related to academic, educational, and occupational outcomes. Other descriptions of intellectual ability include specific skills and talents such as aesthetic (e.g., musical), mechanical, social, and
nature-based intelligences (Gardner, 2018). Motivational factors such as growth mindsets, curiosity, and effort also contribute to intellectual functioning (Dweck & Yeager, 2021; Kovas et al., 2015).
The Cattell-Horn-Carroll (CHC) model of intelligence is the most influential model. The CHC model integrates two theories of intelligence: the Horn and Cattell Fluid­Crystallized theory and Carroll’s hierarchical theory. The Fluid-Crystallized theory differentiates between fluid intelligence, the ability to reason and solve problems in new situations, a nd crystallized intelligence, the ski lls and k nowledge acquired through education and experience. Carroll’s theory describes a multi-level approach with a general ability factor, g, accounting for most of the variance in intellectual functioning. Carroll also describes a level with eight broad abilities, including fluid intelligence, crystallized intelligence, general memory and learning, processing speed, auditory processing, visual perception, retrieval ability, and decision speed. There are approximately 70 more narrow abilities at a third level of functioning (McGill & Dombrowski, 2019; McGrew, 2009). The CHC model is especially important because it influences the development and revision of many tests designed to assess intelligence and cognitive ability in schools and clinical contexts (McGill & Dombrowski, 2019).
Another perspective on intelligence contrasts general intelligence, typically assessed by tests focused on cognitive tasks, with adaptive intelligence, intelligence that is used in the context of biological adaptation to the environment (Sternberg, 2019). Adaptat ion to environments includes f itt ing into environments, shaping environments to fit oneself, and selecting new environments. Adaptive intelligence includes practical, creative, and wisdom-based skills. There are, of course, overlapping intellectual processes across general and adaptive intelligences. These include “recognizing the existence of a problem, defining the nature of a problem, mentally representing the problem, formulating a strategy to solve the problem, monitoring the strategy’s effectiveness … , and evaluating the effectiveness of the strategy after problem solution” (Sternberg, 2019, p. 26). Adaptive intelligence may be assessed in individuals, in groups, or in species. Multiple factors inf luence the ways in which these general and adaptive intelligences are used in different settings and valued by different groups and cultures (Nisbett, 2019).
Cognitive and Intellectual Functioning across Development
To understand the pathways displayed by children with intellectual developmental disorder and the ways in which learning is accomplished for typically developing children and compromised for children with learning disorders, we must examine both cognitive development (general age­related trends) and intellectual development (individual differences observed across children at all ages). With respect to cognitive development, we need to pay attention to the components and processes of cognition (e.g., perception,
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Developmental Tasks and Challenges Related to Intelligence and Cognition 89
Age (years)
18
Proportion of variance in cognition
Genes
attention, memory, concept formation, and mental rules and representations). As described in Chapter 2, research on cognitive development focuses on the dynamic interaction of tasks, contexts, and emotional states that influence cognition to explain the how and why of children’s thinking and learning. Models of cognition emphasize evolutionary contexts, behavioral genetics, and epigenetics and both qualitative and quantitative change across development (Bjorklund, 2018).
There is general agreement that typically developing children display steady, linear progress in cognitive achievements, with occasional reorganizations or qualitatively distinct developmental leaps. For example, children learn and remember more information as they age, but they also become faster and more efficient at manipulating that information. The pace of progress is greater through the preschool and elementary school years and slows somewhat during adolescence.
With respect to intellectual development, there is an ongoing emergence of intellectual functioning as well as patterns of strengths and weaknesses in both components and mechanisms (Bjorklund, 2018). Components and mechanisms include factors such as reasoning, problem solving, and learning. Individual differences, with some children displaying higher levels of intelligence and other children displaying lower levels, appear relatively stable from four or five years of age through adulthood, with growth, change, and decline observed throughout the lifespan (Deary et al., 2021).
Genes, the Brain, and the Environment
Both heredity and the environment contribute to children’s cognitive and intellectual development. Numerous genes are involved in the development and stability of complex psychological traits such as intelligence. The contribution of any single genetic variant is relatively tiny. The genetic variants associated with brain structure and function appear to influence general intellectual abilities rather than specific ones, with links to neurogenesis (i.e., the creation of new neurons), neuron differentiation, and synaptic processes. Imaging technology provides compelling evidence of differences in brain volume, grey matter, white matter, and connectivity over time (Bathelt et al., 2019; Deary et al., 2021; Plomin & Von Stumm, 2018).
Genetic effects on intelligence increase w ith a ge. Examples of gene by environment by time (G × E × T) processes illustrate these effects. As children age, they are increasingly able to select environments and seek out experiences that align with their genetic predispositions. Children with above average abilities, for example, may choose more challenging books to read or spend more time taking apart electronics to understand how they work. Children are also directed to specific environments and experiences by adults. Parents may sign up tech-savvy children for science camps and teachers may encourage language-loving kids to participate in extracurricular activities such as debate or
theater. Early genetic influences on cognitive abilities, then, become amplified (or magnified) over time (Tucker-Drob et al., 2013; refer to Figure 6.1).
The increasing impact of genes on the variance and stability of intelligence is clear when it is compared to the impact of genes on personality over time (Briley & Tucker­Drob, 2017; refer to Figure 6.2). It is also important to note the decreasing influence of shared environments over time for intelligence and the absent influence of shared environments on personality. These data suggest that it is essential to consider each child’s unique experiences in family and environmental contexts.
Genetic effects also contribute to individual differences in motivational factors such as intellectual interest. Intellectual interest differentially predicts knowledge and academic achievement for children in high-SES and low­SES circumstances (Briley & Tucker-Drob, 2017, p. 59). That is, children who are more curious seek out experiences that support learning and even more curiosity but only if they are in settings such as homes with books and creative toys, high-quality daycares, and well-resourced classrooms where these learning experiences are available and where adults can direct and support them. When we explore the interaction of genes and environments for intelligence and motivational factors, we understand better how children who experience the many disadvantages of poverty may not be able to develop their full or real intellectual potential.
In addition to SES, the child’s immediate and larger environments also have considerable impact. Prenatal and postnatal environments are very important. Maternal drug or alcohol use or exposure to toxins negatively affects
Figure 6.1 Genetic and environmental influences on cognition across development
Family environment
1.0
0.8
0.6
0.4
0.2
0.0 0246810 12 14 16
Source: Tucker-Drob et al. (2013). Genetic and Environmental Influences on Cognition Across Development and Context.
Unique environment
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Editorial review has deemed that any suppressed content does not materially affect the overall learning experience. Cengage Learning reserves the right to remove additional content at any time if subsequent rights restrictions require it.
90 Chapter 6 Intellectual Developmental Disorder and Learning Disorders
Age (years)
Variance in Cognitive Ability
Proportion of variance in cognitive ability
Age (years)
Variance in Personality
90
Figure 6.2 Proportion of variation in cognitive ability and personality attributable to genes, shared environment, and nonshared environments
1.0 Genes Shared environment
0.8
0.6
0.4
0.2
0.0
Source: Briley & Tucker-Drob (2017). Comparing the developmental genetics of cognition and personality over the lifespan.
10 20 30 40 50 60 70 80 90
Nonshared environment
intellectual and cognitive abilities. Parental factors such as education, interest in academics, and beliefs about children’s intelligence have all been associated with more positive intellectual outcomes (Dweck & Yeager, 2021; Nisbett et al., 2012). Sociocultural influences on curricular content, teaching practices, and classroom settings also contribute
1.0
0.8
0.6
0.4
0.2
Proportion of variance in personality
0.0 10 20 30 40 50 60 70 80
scores observed over many decades (Flynn, 1987, 2007). With data on IQ trends in 30 nations, researchers suggest that societal development and modernization led to intellectual gains. Better nutrition, reductions in exposure to environmental toxins, better health, and better schooling continue to contribute to
meaningful gains in intelligence (Giangrande et al., 2022). to differences in academic pathways and achievement (Ellis et al., 2017; Sternberg, 2019).
One last point about environmental factors, in cultural and global context: Our understanding of children’s (and adults’) intelligence across countries and continents requires consideration of the “Flynn effect,” the gradual increase in IQ
Measures of Intelligence
The measurement of intelligence across the range of cognitive abilities has been the source of many scientific controversies and ethical issues. Intelligence and IQ testing were tragically linked to the eugenics movement in the early 20th century. Intelligence and IQ testing were also the focus of many vehement nature-nurture assertions, particularly those connected to innate differences and racial and cultural bias. The use of biased intellectual and ability tests to track students problematically and unfairly into academic and non-academic pathways reflects another misuse of theory and research on intelligence (Deary et al., 2021).
The history of intelligence testing of youth in the US provides another perspective on the goals and consequences of testing (Kranzler et al., 2016). Between the late 1800s and the early 1900s, school reforms in teaching and curricula were required to meet the needs of an increasingly large and diverse group of children. By the mid-1920s, group intelligence tests were widely used to sort students by ability. Approximately
istock.com/SDI Productions
50 years later in 1975, the Education for all Handicapped
Curricular content, teaching practices, and classroom settings influence academic pathways and achievement.
Children Act was passed by the US Congress and reauthorized in 2004 as the Individuals with Disabilities Education Act
Genes Nonshared environment
(shared environment = 0)
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Intellectual Developmental Disorder 91
02
IQ
Org
(IDEA). The law mandates free and appropriate education and services for youth with disabilities. Although the law provides guidelines for the use of intelligence tests, there is wide leeway for state implementation (Kranzler et al., 2016).
Individual intelligence tests are used to identify intellectual developmental disorder, learning disorders, and giftedness. The most frequently used measures of intellectual and cognitive ability are the Wechsler Intelligence Scale for Children, the Stanford-Binet Intelligence Scale, the Woodcock-Johnson Tests of Cognitive Abilities, and the Kaufman Assessment Battery for Children. The CHC model of intelligence is increasingly used to guide test development and revision. School psychologists, child clinical psychologists, and other licensed specialists are trained to do these assessments and interpret the results (Kranzler et al., 2016; McGill & Dombowski, 2019).
There are many ways to score and interpret intelligence and ability tests and almost as many theoretical and psychometric concerns (Beaujean & Benson, 2019). These concerns include the lack of a strong evidence base for many of the subtests and scores on widely used tests. These concerns also raise questions about some of the interpretations and recommendations made by test administrators. Meaningful decisions about classroom assignments, special education services, and short- and long-term educational achievement require the best possible assessments.

Intellectual Developmental Disorder

Table 6.1 Intellectual Developmental Disorder: Summary of DSM-5-TR Diagnostic Criteria
A. Deficits in intellectual functioning including
general reasoning, problem solving, abstract thinking, and academic learning, in comparison to age-, gender-, and socioculturally-matched peers.
B. Deficits in adaptive functioning resulting in
inability to meet age-normed developmental expectations in areas such as personal independence, communication, and social behavior. Ongoing support needed in one or more activities of daily living across multiple settings, including home, school, work, and community.
C. The onset is during the developmental period
and is based on clinical assessment and testing of intellectual functions, neuropsychological tests, and tests of adaptive functioning.
Although both the DSM-5-TR and AAIDD conceptualizations of intellectual developmental disorder recognize the interdependent nature of intellectual and adaptive functioning as well as multiple etiologies and outcomes, the AAIDD emphasizes a more holistic perspective. In this view, IDD is not a physical or mental disorder but rather a developmental disability that involves
Intellectual developmental disorder (previously known
as intellectual disability) involves deficits in intellectual
functioning and deficits in adaptive functioning, both of
which emerge early in development (American Association on Intellectual and Developmental Disabilities (AAIDD), 2021; American Psychiatric Association, DSM-5-TR, 2022) (refer to Table 6.1). Deficits in intellectual functioning are evaluated with respect to the range and distribution of intelligence (IQ) scores in typically developing individuals (refer to Figure 6.3).
One of the most important distinctions related to the clinical presentation of intellectual developmental disorder is level of severity. Mild, moderate, severe, and profound levels of severity indicate the degree of impairment in adaptive functioning. According to the American Association on Intellectual and Developmental Disabilities (AAIDD) and DSM-5-TR, adaptive functioning refers to how well an individual negotiates everyday tasks and challenges in conceptual, social, and practical domains. Some children with below average adaptive functioning exhibit significant problems with basic activities of daily living such as getting dressed and maintaining hygiene; others do well with basic tasks but struggle with more complex activities, such as performing household chores or managing school responsibilities.
Figure 6.3 Bimodal distribution of IQ scores
Familial
anic
03570100 15
Source: Zigler & Hodapp (1986). Understanding Mental Retardation. Reprinted with the permission of Cambridge University Press.
00
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92 Chapter 6 Intellectual Developmental Disorder and Learning Disorders
significant limitations both in intellectual functioning and in adaptive behavior leading to impaired conceptual, social, and practical skills. Conceptual skills include language and literacy; number, money, and time concepts; and self-direction. Social skills include interpersonal skills, gullibility and naivete, the ability to follow rules, and the ability to avoid being victimized. Practical skills include personal care, schedules and routines, safety, and travel and transportation. Each area of dysfunction includes a corresponding description of the support necessary for maximizing the individual’s well-being: intermittent, limited, extensive, or pervasive support.
Rather than emphasizing the degree of deficit, the AAIDD emphasizes the possibility of adaptation. Whether the definition of intellectual developmental disorder emphasizes deficits or supports, it is important to acknowledge the impact that the actual name of a disorder or a disability has on individuals who are diagnosed, on family members, and on society. Labels and terms that are clear and unbiased and “that optimize outcomes rather than interfere with them” are the labels and terms that should be used to enhance communication and decrease stigma and discrimination (Woods et al., 2019, p. 693).
Decades of work on the quality of life construct exemplify the integration of person-by-environment ecological models and the support-based approach to IDD (Schalock & Alonso, 2022). Quality of life (QOL) includes three factors: independence, social participation, and well­being. Independence reflects an individual’s personal development and self-determination. Social participation reflects an individual’s relationships and inclusion. Well­being includes emotional, physical, and material outcomes (refer to Table 6.2). An individual’s system of supports should address all these aspects of adaptation.
Table 6.2 The Quality of Life (QOL) Framework
Factor Domain
Independence Personal Development
Self-determination
Social Participation Interpersonal Relationships
Social Inclusion
Human and Legal Rights
Well-Being Emotional Well-Being
Physical Well-Being
Material Well-Being
Adapted from: Schalock and Alonso (2013). The Impact of the Quality of Life Concept on the Field of Intellectual Disability.
The Case of Katherine
Katherine is an 8-year-old girl, the fourth of seven brothers and sisters, but her mother, Mary, always refers to her as “my baby, because she never fusses.” Katherine and her family live with her grandmother in the small three­bedroom apartment where Mary grew up. Mary dropped out of high school when she became pregnant with her first baby at age 15. Katherine’s grandmother cleans houses for a living, and Mary cares for the children, who range from 2 to 14 years of age. Katherine’s father, Philip, is a food services worker at the local hospital. He visits the children infrequently.
When Katherine neared the end of first grade, her mother was surprised to hear her teacher’s concern that she wasn’t making adequate progress at school. Katherine’s three older brothers had been a handful, with each of them experiencing discipline problems ahead of Katherine in the same public school. Mary had noticed that Katherine seemed to lag a little behind her brothers in learning to walk and talk, but she just assumed that she would eventually catch up. Mary didn’t usually make it to parent nights at school, but she had heard no bad reports on Katherine from the kindergarten teacher, and she was always pleased by how Katherine played so well with her younger sisters. But the teacher told Mary that Katherine wasn’t making progress in letter and word recognition, had difficulties following directions, and seemed to be getting more and more anxious and disconnected from the other children as the year went on. It didn’t help that some of the other children had started to tease Katherine about her reading struggles.
The school psychologist’s assessment of Katherine revealed that she had an IQ of 65 and adaptive skill deficits in the sensorimotor, communication, and self­help areas. Katherine’s functioning in each of those areas was more than two standard deviations below the norm for her peers, which led to her diagnosis of intellectual developmental disorder of mild severity.
An Indiv idualize d Education Plan (IEP) wa s developed in which Katherine remains in the regular classroom for about half the day with the support of a teacher’s aide to guide her work more closely. She also leaves the classroom periodically to participate in specialized classes dedicated to more intensive work on her reading, fine motor, and auditory processing abilities. The IEP contains very specific goals in each skill area along with a timetable for evaluating Katherine’s progress toward each of the goals several times a year. Like any child, Katherine has individual strengths and weaknesses in different areas, and the learning goals are continually readjusted over time to reflect progress or the need to reinforce certain skills. Katherine’s classroom teacher has also adopted a curriculum unit that addresses disability stereotyping and helps the other children in the class to both understand and be more supportive of Katherine.
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Intellectual Developmental Disorder 93
The school psychologist met with Mary to help her better understand the nature of Katherine’s disability and her future expectations. She explained that Katherine’s development in many ways follows the same sequence and growth pattern as other children but progresses more slowly and will not continue as far in terms of her ability to think abstractly and process complex information. As she matures, her caregivers will need to pay increasing attention to the level of support that Katherine requires, in line with the standards established by the AAIDD. It is likely that Katherine’s necessary support level as she moves into adulthood will fall somewhere between intermittent (e.g., as needed, such as following a job loss or health crisis) and limited (e.g., consistent support in areas like vocational training and housing assistance that varies in intensity).
Taking into account the various definitions of intellectual developmental disorder and the difficulties associated with accurate calculations, epidemiological estimates of the prevalence of IDD range between 1% and 3% of the population (Maulik et al., 2011; Reichenbert et al., 2016; Zablotsky et al., 2019). Most individuals (85%) with IDD are diagnosed with mild levels of severity, requiring intermittent support (as described in the case of Katherine). Approximately 10% are diagnosed with moderate levels, requiring limited support; 3% to 4% with severe levels, requiring extensive support; and 1% to 2% with profound levels, requiring pervasive support. IDD is observed much more frequently in boys (Zablotsky et al., 2019).
Zigler’s Developmental Approach to Intellectual Developmental Disorder
Several of the most important and affirming proposals about children with intellectual developmental disorder were put forth by Edward Zigler (1969, 1971). Zigler described two groups of children. The first group included children with mild forms of intellectual disability, reflecting the low end of the normal distribution of intelligence in the general population (refer to Figure 6.3). Because this type of intellectual disability appeared to run in families, it was (and still is) often called familial (or cultural familial) intellectual developmental disorder. The second group included children with more severe forms of intellectual disability, usually the result of genetic disorders.
Zigler’s developmental approach asserted that most children with IDD (i.e., children with mild forms of disability) display developmental pathways that are like children without IDD. Although delayed in their mastery of most motor, cognitive, emotional, and social tasks, and stopping short of the eventual achievements of their typically developing peers, children with IDD exhibit the same kinds of sequences and coherent growth that are characteristic of most children. That is, children with IDD develop slowly, but in organized ways.
Broadening his concern beyond deficits and dysfunctions, Zigler insisted on a holistic perspective, the critical need to understand patterns of strengths and weaknesses, and the motivations and personalities of children with intellectual developmental disorder (also refer to Cicchetti & Pogge­Hesse, 1982). Zigler also emphasized the social deprivations and stressors such as frequent failure experienced by many children with IDD that influenced developmental outcomes. The developmental approach of Zigler has inspired decades of research and clinical work (Burack et al., 2021; Hodapp, 2021).
Genotypes and Neurobehavioral Phenotypes
A lot of research has focused on identifying and understanding children with intellectual developmental disorder by grouping them according to etiology. Attention is often focused on various genotypes—the underlying genetic variants—associated with IDD. As described in Chapter 2, research on genetic and epigenetic factors has increased exponentially, with much of the work focused on neurodevelopmental disorders, including IDD (Pennington, 2015; Plomin & Deary, 2015). These genetic syndromes are medical diagnoses rather than psychiatric or psychological categories. The genotype assumption is that different etiological explanations correspond to differences in specific dysfunction and disability. Hundreds of individual genetic variants (e.g., mutations, duplications, deletions) and major chromosome abnormalities are linked with specific forms of IDD. Most individuals with these identifiable genetic etiologies display more severe forms of disorder. Research on genetic disorders and IDD has largely focused on Down syndrome, Williams syndrome, and Fragile X syndrome (Hodapp, 2021).
The related construct of neurobehavioral phenotypes emphasizes the likelihood that a child will display a particular pattern of difficulties given a particular genetic etiology. In other words, most children—but not all children—with a particular genetic background will display similarities related to physical characteristics, neurophysiological processes, cognitive and linguistic profiles, perceptual skills and deficits, socioemotional functioning, and overall outcomes. One example of a distinctive neurobehavioral phenotype is the extreme eating behaviors observed in individuals with Prader­Willi syndrome (and not in other individuals with other genetically influenced disorders). Another example of a phenotype is the neurobehavioral pattern displayed by children who experience prenatal alcohol exposure. This phenotype is associated with an environmental rather than genetic cause.
Genotype-phenotype research goals include the descriptions of coherent and organized patterns of deficits and dysfunction observed in individuals diagnosed with intellectual developmental disorder and other neurodevelopmental
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