William T. O’Donohue, Lorraine T. Benuto and Lauren Woodward Tolle (eds.)Handbook of Adolescent Health Psychology201310.1007/978-1-4614-6633-8_34© Springer Science+Business Media New York 2013
Adolescents with Intellectual Disabilities
(1)
University of New Mexico, MSC05 3040, 1 University of New Mexico, Albuquerque, NM 87131-0001, USA
(2)
Vanderbilt University, 230 Appleton Place, 40, Nashville, TN 37203, USA
Abstract
This chapter addresses the experiences of individuals with intellectual disabilities as they transition from childhood to adult life. We first provide a brief overview of intellectual disability, before describing issues related to adolescents with intellectual disability in the areas of health, mental health, socialization, education, and post-school engagement. We conclude by considering the experiences of an adolescent with intellectual disability in the context of the family. Throughout, we consider the transitions experienced by individuals with intellectual disabilities during adolescence—in some ways parallel to the experiences of their typical peers, and in some ways markedly different.
By definition, adolescence is a time of change, marking the transition from childhood to adulthood. During this period, the hormonal and physical changes of puberty are accompanied by concurrent transitions related to social relationships, family dynamics, and engagement in school and the community. Also during this period, adolescents navigate new social roles, develop a social identity, and explore romantic relationships. Adolescents also typically take on new roles and responsibilities within the family, producing a shift in the family dynamic. Finally, similar changes in roles are often evident in community contexts, with adolescents meeting greater challenges at school and in their communities—from taking more advanced classes to entering the workforce.
Though their experiences often differ from those of typically developing adolescents, adolescents with intellectual and developmental disabilities also experience changes in most aspects of their lives. Some attain the typical milestones of adolescence, such as getting a driver’s license or going to college. For many youth with intellectual and developmental disabilities, however, these milestones are delayed, modified, or do not occur at all. At the same time, a host of unique issues, challenges, and systems arise for these individuals.
This chapter addresses the experiences of adolescents with intellectual and developmental disabilities. Our focus throughout will be on youth with intellectual disabilities (ID). These adolescents encounter similar transitions and challenges as the larger group of individuals with various developmental disabilities; all such individuals (regardless of type of disability) need similar considerations, accommodations, and supports during adolescence. In addressing the needs of adolescents with ID, we first present the definition and classification of ID, its varied causes, and specific manifestations among individuals with certain genetic disorders. We then address issues related to the physical and mental health of individuals with ID, before discussing other transitions experienced by adolescents with ID—in terms of education, socialization, and post-school engagement. Finally, we conclude by considering the experiences of adolescents with ID in the context of the family.
Intellectual Disabilities
Definition and Classification
The current edition of the Diagnostic and Statistical Manual of Mental Disorders characterizes ID with a three-factor definition (American Psychiatric Association [DSM-IV-TR], 2000). First, individuals with ID have subaverage intellectual functioning, as evidenced by an intelligence quotient (IQ) score of 70 or below on an individually administered test. Second, this subaverage intellectual functioning must be associated with or result in impairments in adaptive behavior. Finally, to be considered an intellectual disability, these characteristics begin during childhood or adolescence, before the individual is 18 years of age.
Though the general components of this three-factor definition are mostly accepted, the ways in which these components are defined and emphasized remain open to debate (Hodapp, Griffin, Burke, & Fisher, 2011). For example, the validity of the IQ criterion has been questioned, as the intellectual ability of an individual with an IQ slightly above 70 and an individual with an IQ slightly below 70 are not readily apparent. Because of this and other issues related to reliable measurement, the most recent definition of ID suggested by the field’s main professional group, the American Association on Intellectual and Developmental Disabilities (AAIDD, 2011), emphasizes the need for clinical judgment related to the assessment of IQ. Similarly, much debate relates to the criterion of impaired adaptive behavior—including the ways in which adaptive behavior is measured and categorized, as well as its importance in relation to the IQ criterion.
Among individuals with ID, great variation exists in levels of functioning. Traditionally, professionals have categorized people with ID according to their level of intellectual impairment (Hodapp et al., 2011). These categories are associated with a range of IQ scores: mild (IQ = 55–70), moderate (40–54), severe (20–25—40), and profound (below 20–25) intellectual disabilities. More recently, a different system of classification has emerged based on the intensity of support needed by individuals, rather than their levels of intellectual functioning (AAIDD, 2011).
Etiology and Behavioral Phenotypes
Just as variation exists in their levels of functioning, individuals with ID also vary in the causes of their disabilities (Zigler & Hodapp, 1991). Traditionally, professionals have categorized the causes of ID into two groups, undifferentiated and organic. The term “undifferentiated” refers to unknown causes of ID, and may include such factors as polygenic inheritance, environmental deprivation, or undetected organic causes (Hodapp, 1994). The term “organic” refers to identified origins of ID, including hundreds of causes that can occur before, during, or after birth. Prenatal causes encompass over 1,000 genetic disorders, fetal alcohol syndrome, and accidents in utero. Other causes include such birth-related complications as prematurity and anoxia. Finally, postnatal causes encompass both illness and accidents resulting in subaverage intellectual functioning and impairments in adaptive behavior.
Among individuals with certain types of organic ID—particularly those with certain genetic disorders—specific behavioral phenotypes, or profiles, have been identified (Dykens, Hodapp, & Finucane, 2000). These profiles denote the greater likelihood for individuals with a given disorder to manifest certain cognitive, linguistic, or adaptive strengths and weaknesses or periods of faster or slower development. In addition, even compared to adolescents with ID more generally, adolescents with several of these genetic conditions show increased risks for specific psychiatric disorders, maladaptive behaviors, or physical health problems.
Two genetic conditions can serve as examples. In the first condition, Williams syndrome, many individuals demonstrate relative strengths in expressive language and relative weaknesses in visuospatial skills. Many individuals with Williams syndrome are also hypersensitive to sound and demonstrate musicality in various ways (e.g., interest in or talent for music). In addition, people with Williams syndrome are often described as hyper-social and friendly; at the same time, compared with the typically developing population, these individuals more often experience numerous anxieties and fears (Dykens, 2003).
Adolescents with another genetic condition, Prader–Willi syndrome, also show a distinct profile (Dykens et al., 2000). Though most such individuals have mild to moderate ID, children and adolescents with Prader–Willi syndrome excel in tasks that involve visual organization and perception (e.g., completing jigsaw puzzles; Dykens, 2002). In contrast, individuals with Prader–Willi syndrome typically do not perform well on tasks that involve sequential processing. Additionally, a hallmark behavior of people diagnosed with Prader–Willi is hyperphagia, or compulsive overeating. If unchecked, hyperphagia can result in morbid obesity, other related health problems, and even death. In addition to compulsive eating, people with Prader–Willi often engage in other repetitive, obsessive-compulsive behaviors (Dykens, Leckman, & Cassidy, 1996; Dykens & Roof, 2008).
This brief consideration of behavioral phenotypes highlights the variability that exists among individuals with ID. Ultimately, behavioral phenotypes may help identify the most effective interventions for a certain individual or group (Hodapp & Fidler, 1999). These examples also offer a more nuanced view of the characteristics of individuals with ID—too often defined negatively—by including their positive characteristics and strengths. Differences related to etiology are revisited throughout the chapter.
Health of Adolescents with ID
In considering the health of adolescents with ID, we begin by discussing issues related to physical health, including adverse health conditions, pubertal development, and health literacy. Next, we address the many issues related to mental health, before examining health care for adolescents with ID.
Physical Health
Associated Health Conditions and Secondary Conditions
Adolescents with ID experience higher rates of a variety of “secondary conditions” (Krahn, Hammond, & Turner, 2006). These conditions are health problems that are not directly related to ID per se, but that nonetheless affect individuals with ID disproportionately. For example, individuals with ID, including teens, are much more likely than those in the general population to experience obesity, poor oral health, pressure ulcers, and various other health problems. With improvements in health literacy and access to health care, such secondary conditions are preventable. Though preventable, individuals with ID nonetheless experience these secondary health problems at disproportionately high rates.
Various other associated health problems are also related specifically to certain conditions or etiologies of ID. Consider, for example, Down syndrome and cerebral palsy. Summarizing health concerns among children and adolescents with Down syndrome, Roizen (2010) noted that children with Down syndrome are especially prone to congenital heart disease, respiratory issues, gastrointestinal problems, celiac disease, thyroid problems, leukemia, obesity, and visual and hearing problems (see also, Schieve, Boulet, Boyle, Rasmussen, & Schendel, 2009). Likewise, individuals with cerebral palsy may experience a whole host of co-occurring conditions related to their disability. Such children and adolescents more often experience motor impairment, sensory loss, epilepsy, and other impairments (Rosenbaum, Paneth, Leviton, Goldstein, & Bax, 2007). Great variation exists in both the types and levels of health problems experienced among individuals with cerebral palsy.
Development During Puberty
Compared with the general population, people with developmental disabilities are prone to differences in pubertal development. For example, one study estimated that youth with neurodevelopmental disabilities are about 20 times more likely to experience early pubertal development (Siddiqi, Van Dyke, Donohue, & McBrien, 1999). Within specific genetic disorders, adolescents with Williams syndrome typically begin puberty earlier than adolescents in the general population, though pubertal development otherwise proceeds normally (Wang & Blum, 2003). In contrast, teens with Prader–Willi experience many issues related to puberty, including genital abnormalities and incomplete maturation (Crinò et al., 2003).
Partly because pubertal development may be atypical, teens with ID need to be educated about pubertal changes. Just like their peers without disabilities, adolescents with disabilities have sex drives and sexual interests, and are just as likely to experiment with sexuality (Murphy & Elias, 2006). Consequently, adolescents with ID need to learn about appropriate sexual behavior, including the appropriateness of behaviors in certain situations. Unfortunately, many adolescents with ID are not provided with appropriate sex education. Programs need to be tailored to meet the comprehension levels of these adolescents, starting with basic information about the physical changes experienced during adolescence. These courses should also extend to comprehensive sexual health education, including information about contraception, sexually transmitted diseases, and pregnancy. In addition to appropriate sex education, a broader knowledge of health and self-care needs should be fostered among adolescents with ID.
Knowledge of Health and Self-Care Needs
Multiple factors have been identified that influence the health of individuals with ID (Walsh & McConkey, 2009). These include genetic factors, social circumstances, environmental factors, and inadequate health care (Krahn et al., 2006). In addition to these influences on the health of individuals with ID, Krahn et al. (2006) note the influence of individual behaviors that precipitate or exacerbate secondary conditions. Inadequate knowledge of healthy lifestyle choices puts many individuals with ID at additional risk of poor health outcomes—outcomes that are largely preventable by adopting healthy habits.
Low health literacy has been linked with a variety of negative outcomes (Marks, Sisirak, & Hsieh, 2008). For example, people with low health literacy are more likely to be hospitalized or need emergency services, and less likely to utilize preventive services. People with poor health literacy might not understand the importance of healthy behaviors (e.g., nutritious diet, regular exercise). Additionally, some individuals might lack basic safety knowledge related to exercise (e.g., the importance of warming up; ways to safely use equipment). To address these issues, curricula are available to educate individuals with ID about the importance of cultivating healthy habits (e.g., Health Matters; Marks, Sisirak, & Heller, 2010).
In addition to addressing topics related to diet and exercise, curricula are available that include information about other health-related topics. For example, My Health, My Choice, My Responsibility (Vitale, Levitz, & Crimmins, 2007) includes lessons on preparing for medical appointments, self-advocacy in health care, and personal hygiene. Written at a reading level appropriate for adolescents and young adults with ID, these curricula also include age-appropriate examples and activities. Parents, educators, and other professionals can use these curricula to teach health literacy skills to individuals with ID.
Beyond promoting knowledge about the importance of a healthy lifestyle, adolescents with ID must also have opportunities to apply this knowledge. Many individuals with ID have a troubling combination of high body fat, poor strength, and low cardiovascular endurance (Rimmer, 2000). The importance of an active lifestyle is therefore critical to these adolescents, who as a group have generally poor physical fitness. Recognizing this issue, Special Olympics International, in addition to its “Healthy Athletes” screening program, provides opportunities for individuals with ID to participate in athletic training and competition (Horwitz, Kerker, Owens, & Zigler, 2000; Special Olympics, 2005). Such participation in Special Olympics has been linked to greater social competence and more positive self-perceptions (Dykens & Cohen, 1996).
Mental Health
Adolescents with ID also have unique needs related to mental health. Like their typically developing peers, individuals with ID experience great changes during puberty related to brain development and hormonal levels. These changes are often accompanied by intense emotions and changes in mood, and may make individuals more susceptible to various mental health problems. In addition, compared to individuals with typical intellectual functioning, individuals with ID are at a heightened risk for psychiatric disorders (Dykens, 2000). Thus, adolescence is a particularly sensitive time for individuals with ID.
People with ID who also have a diagnosis of a psychiatric disorder are considered to have a “dual diagnosis” (Jopp & Keys, 2001). Because psychiatric conditions among those with ID are often difficult to diagnose or remain undiagnosed, prevalence estimates of dual diagnosis range from 10 to 70 % of individuals with ID (Dykens, 2000). Due to misidentification and misdiagnosis of psychiatric disorders, individuals with dual diagnoses are less likely to receive appropriate treatment, supports, and services. Misidentification of mental health conditions may occur for several reasons, which include diagnostic overshadowing, atypical manifestation of the mental illness, and unavailability of appropriate assessments to measure symptoms among individuals with ID.
Misidentification and Misdiagnosis
“Diagnostic overshadowing” refers to instances when the mental health problems of an individual with ID are attributed to impairments in adaptive behavior related to ID rather than to a concurrent psychiatric disorder (Jopp & Keys, 2001). For example, if an individual with ID displays behaviors symptomatic of depression or anxiety, a professional might attribute these to the person’s level of intellectual functioning, rather than considering the possible need for psychiatric diagnosis and treatment. In general, the more severe the individual’s symptoms, the more likely a clinician will be to consider the possibility of dual diagnosis.
Another issue concerns atypical manifestations of psychiatric disorders. Specifically, many individuals with ID display atypical symptoms, behaviors that do not generally denote a particular psychiatric disorder among typically developing adolescents (Antonacci & Attiah, 2008). For example, obsessive-compulsive disorder (OCD) is associated with a variety of “classic” compulsions (e.g., repetitively washing hands); among individuals with ID, however, these compulsions may not occur (King, Stavrakaki, & Gedye, 2007). Compulsions that require abstract thinking or counting skills may be rare or absent among individuals with ID, as well. Additionally, individuals who have limitations in expressive language are less able to report their experience of obsessive thoughts. Finally, individuals with ID might not meet the typical criteria for OCD involving awareness that their compulsions are excessive, or that compulsions are causing them distress.
Assessment
Issues such as diagnostic overshadowing and atypical manifestation are problems involving the assessment of individuals with ID. As noted above, appropriate assessment is difficult when individuals with ID have limited expressive language. In a psychiatric interview, limitations in language may result in the inability to communicate information concerning the nature, onset, duration, frequency, and severity of symptoms. In addition, limitations in language and intellectual ability may prohibit individuals with ID from expressing abstract thoughts or feelings that relate to their experience of a psychiatric condition.
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