Characteristics and Needs of People With Intellectual Disability Who Have Higher IQs

Abstract

This is the fourth article in a series of articles from the Terminology and Classification Committee of the American Association on Intellectual and Developmental Disabilities (AAIDD). The intent of these articles is to communicate the organization's thoughts on critical issues associated with terminology, definition, and classification in the field of intellectual disability and to stimulate discussion from the field relevant to the 11th edition of AAIDD's Diagnosis, Classification, and System of Supports Manual (working title). In the first article (Schalock et al., 2007), we explained the reasons for shifting from the term mental retardation to the preferred term intellectual disability and stated that the two terms refer to the same group of people. In the second article (Wehmeyer et al., 2008), we distinguished between operational and constitutive definitions of intellectual disability and discussed their application to understanding the construct underlying the term intellectual disability. Although operational criteria for diagnosis have been generally consistent for the past 35 years, the construct underlying the term intellectual disability (and, thus, the constitutive definition of intellectual disability) has changed significantly due to the impact of the social–ecological model of disability. In this model, intellectual disability is understood as a multidimensional state of human functioning in relation to environmental demands. The third article (Thompson et al., 2009) focused on the supports and support needs of persons with intellectual disability. This article suggested that (a) supports can be conceptualized as a bridge to more meaningful life experiences and personal outcomes, (b) the support needs of individuals can be considered within models of human functioning, (c) a five-component process for individualized supports planning can guide the work of planning teams, and (d) supports planning can be differentiated from other planning approaches used in the field of intellectual disability.In this fourth article, we describe the group of individuals with intellectual disability and higher IQs and the challenges that they face in life. Individuals with an intellectual disability who have higher IQs struggle in society. This is true despite the fact that all individuals with intellectual disability typically demonstrate strengths in functioning along with relative limitations. This group of people with intellectual disability who have higher IQs constitute about 80% to 90% of all individuals with intellectual disability. (Intellectual disability is used to address the same population of individuals as the term mental retardation [Schalock et al., 2007].) Frequently, there are no identifiable causes for the disability. Most of these individuals are physically indistinguishable from the general population because no specific physical features are associated with intellectual disability at higher IQs. Similarly, unlike in the case of certain genetic “behavioral phenotypes,” no definite behavioral features are specifically associated with intellectual disability with higher IQs. Personalities also vary widely, as in the rest of the human population: Some individuals with intellectual disability are passive, placid, and dependent, whereas others are industrious, cooperative, appropriately assertive, or even aggressive and impulsive. There is considerable variation in the lifestyle outcomes achieved by adults with intellectual disability who have higher IQs. Whereas many of these individuals “living ‘independently’ predictably will need support in relation to specific issues” (e.g., housing, employment, transportation, health services; Stancliffe & Lakin, 2007, p. 443), some individuals in this group “may develop homes and home lives independent of a formal agency support once the time comes for them to live separately from their families” (Felce & Perry, 2006, p. 410). These documented outcomes contrast sharply with the incorrect stereotypes that these individuals cannot have friends, jobs, spouses, or children or be good citizens.People in this group primarily are identified when they are in school, because school demands place their intellectual and adaptive behavior limitations in clear relief and because schools have funding, bureaucracy and management systems (albeit imperfect), and a legal obligation to identify disabilities in all children. However, beyond school age, when activities may be less “intellectual,” bureaucracies do not routinely identify people having problems because of intellectual limitations (Campbell & Fedeyko, 2000), and needed services and supports are unavailable or rejected. As a result, these people continue to experience significant difficulties achieving success or even a healthy existence in adulthood.Frequently, the gap between their capabilities and the demands from their environments grows as they leave school, as society becomes more complex, and as the standards for successful adulthood climb. Well-designed individualized supports can help bridge the gap between capabilities and demands, but the reality is that many of these individuals do not have access to needed supports. Thus, life's demands frequently impose overwhelming challenges to those who live with significantly limited intellectual ability and adaptive behavior.In this article, we describe the group of individuals with intellectual disability and higher IQs and discuss how individuals in this group are delineated depending on which classification system is used. In addition, we explore how intellectual limitation exists along a continuum, revealing many similarities in human-functioning limitations between individuals on either side of the definitional dividing line. That is, individuals with intellectual disability and higher IQs (slightly below the ceiling of approximately 70–75) share much in common with individuals without a diagnosis of intellectual disability, whose functioning is sometimes referred to as borderline: Individuals who do not have intellectual disability but who have low IQs, above the ceiling of approximately 70–75. Last, we reiterate the critical importance of creating accessible, individualized supports.All people with intellectual disability, including those with higher IQs, belong to a single disability group (people with intellectual disability). However, the application of various classification systems to subdivide the group leads to somewhat different ways of understanding these individuals and their needs. Classification systems based on relevant criteria should be selected by clinicians and others for specific professional purposes that in some way benefit the individuals who are classified. For example, service providers may choose classification systems that subdivide the group of people with intellectual disability into smaller groups based on support needs, such as using the Supports Intensity Scale (Thompson et al., 2004) assessment to classify individuals by the intensity of their support needs. Physicians and geneticists may subdivide the group based on their etiology (e.g., genetic classification systems), whereas psychology and education researchers sometimes subdivide the group by IQ or adaptive behavior score bands (e.g., the mild, moderate, severe, profound classification system).Each of these sortings, however, should cause individuals with intellectual disability with higher IQs to emerge into clearer view, albeit in slightly different ways. The variety of classification systems that are based on different criteria may partially account for why this group historically has had so many different names. Earlier names, most of which now are highly stigmatizing (e.g., feebleminded, moron, “moral idiots” [Trent, 1994, p. 20]), were followed by new names taken from then-current definitions or classification systems (e.g., educable mental retardation and mild mental retardation) or names reflecting periods challenging particular characterizations of this group or an expansion of this group: for example, the “six-hour retarded child” (PCMR, 1969), students with “general learning disability” (MacMillan, Siperstein, & Gresham, 1996), and the “forgotten generation” (the combined group of people with intellectual disability with higher IQs and people without intellectual disability but with lower IQs, whose IQs are just beyond the intellectual disability range; Tymchuk, Lakin, & Luckasson, 2001). In general, the names have followed from the classification system or purpose for classifying.Whatever classification system is used, however, it is critical to point out that the challenges faced by individuals with intellectual disability who have higher IQs are significant, and these challenges are similar in many ways to the challenges faced by the group of people with slightly higher IQs (a) who may not be officially diagnosed as having a disability or meet diagnostic criteria for intellectual disability, but (b) who share many limitations in functioning with individuals with intellectual disability who have higher IQs and do meet these criteria. Edgerton (2001) lamented the societal and professional abandonment of these individuals: “Perhaps the most sobering realization is that the majority of these individuals [former “six-hour retarded children”] are not cited in the research literature nor are they known to the mental retardation/developmental disabilities service delivery system” (p. 3).In some ways, it may seem counterintuitive to consider the challenges of individuals with intellectual disability with higher IQs as being equal to or sometimes greater than those with intellectual disability at lower IQs. However, several factors aggravate their challenges: Expectations for performance are higher for people with intellectual disability with higher IQs than those with lower IQs, the tasks given to them are more demanding because of the higher expectations, and a failure to meet those expectations is frequently met by others blaming the individual or the individual blaming him- or herself. Moreover, many individuals with intellectual disability with higher IQs attempt to hide their disability or attempt to pass as normal or try to appear intellectually capable and, thus, miss out on or even reject accommodations that might have been available if their disability had been declared or identified. In addition, the impact of intellectual disability may be increased by the lack of access to needed mental health care, medical care, nutrition, and relationship and parenting assistance. Society's increasing lack of neighborly care for one another may hit people with intellectual disabilities in poorer neighborhoods especially hard. It is clear that only individualized needs assessment will lead to understanding the unique challenges faced by a person with intellectual disability, whether he or she has a higher or lower IQ.To further describe the challenges faced by many individuals with intellectual disability with higher IQs, we address (a) areas in which societal threats are especially marked (e.g., education, socioeconomic status, employment, and housing) and (b) the often inadequate response systems of individuals with intellectual limitations that increase their vulnerability in everyday life.The lifelong experience of having reduced intellectual and adaptive abilities creates a vulnerability that is shared among members of this group. As adults, these individuals have limited academic skills, are often poor, are underemployed or unemployed, and tend to not live independently.The trend in national figures, as traced by Polloway, Lubin, Smith, and Patton (in press) over the past 25 years, indicates little overall variability in the percentage of the school-aged population identified as receiving special education services under the category of “mental retardation” (0.9%), but great variability from state to state. Polloway et al. suggested that slightly more than half of the 0.9% of the school-aged population receiving special education (or 0.5%) should be classified as having mild mental retardation, that is, intellectual disability with higher IQs. (In this section we use the term “mental retardation” because the U.S. Department of Education [2007] and most state departments of education still use this term in place of intellectual disability.)Several important national trends are described by Polloway et al. (in press). First, compared with all other disability groups, children and adolescents with mental retardation spend the most time in separate classrooms, away from their peers in general education: 51.8% of students receiving special education services under the category of mental retardation versus 18.5% of students in any categorical area. During the 1990s, national rates for the inclusion of these students in general education increased from 27.3% to 44.7%, whereas rates for separate setting placement decreased from 72.7% to 55.3% but with great variability among states (Williamson, McLeaskey, Hoppey, & Rentz, 2006). As of the late 1990s, national placement trends reached a stable plateau, but these trends continue to be highly variable across states (Williamson et al., 2006).Second, federal data (U.S. Department of Education, 2007) also indicate a 3:1 ratio of being identified with mental retardation for African American students in contrast to Caucasian students. Disproportionality is greater for African American students than for any other ethnic group. In addition, African American students have a higher probability of being categorized by schools with the label of mental retardation than being categorized with any other high-incidence disability. Findings by Skiba, Poloni-Staudinger, Gallini, Simmons, and Feggins-Azziz (2006) and others (Fierros & Conroy, 2002; U.S. Department of Education, 2007) pointed clearly to this disproportionality: 11% of the school population are African Americans, but more than 29% of students served under the category of mental retardation are African American. Many factors have been proposed as contributors to the disproportionate number of African American students in special education; these factors include poverty, racism, special education decision-making processes, test bias, unequal opportunity in general education (educational resources, number of African American teachers, etc.), school discipline, and disconnect between school culture and African American culture (Mercer, 1973; Skiba et al., 2008).Third, although drop-out rates are generally high for all students with disabilities (recent average of 33.6% across disability groups), Polloway et al. (in press) reported that during the 2002–2003 school year, these rates decreased slightly, with 28.6% of students with mental retardation leaving school early. Last, recent federal data show that only 2% of students with mental retardation are “declassified” from special education, a figure that is lower than for students with learning disabilities (9%) or emotional disturbance (10%). Thus, summarizing these national trends, students served in the category of mental retardation compared with other high-incidence disability categories spend the majority of their school day in separate classrooms, tend to receive special education services and remain categorized longer, and are 25% more likely to be African American and 33% more likely to drop out before finishing school. Even with these educational system problems, many students and their families thrive while in school, only to suffer insurmountable odds when they leave school and face service discontinuity at best or, more likely, a total lack of needed supports.Fujiura's (1998, 2003) research revealed a significantly reduced income for families of all types with a member with intellectual disability–developmental disabilities than for families in the general population; within single-parent households, this contrast was even greater (Fujiura, 1998, 2003; Lewis & Johnson, 2005). The proportion of single-parent households among those with intellectual disability–developmental disabilities is twice that of U.S. family households, with the great majority being headed by women; the economic disadvantage in these household was found to be large (Fujiura, 2003). Compared with nondisabled peers or peers with most other disabilities, youths with intellectual disability who were several years out of high school were found to have almost no successful experience with credit cards or charge accounts and only 1 in 10 had a checking account (Wagner, Newman, Cameto, Garza, & Levine, 2005). In contrast to the majority (two thirds) of youths with other disabilities who showed an increase in having drivers' licenses at this same age, only a minority of youth with intellectual disability with higher IQs had either drivers' licenses or permits. These limitations, related both to a disadvantaged socioeconomic status and cognitive limitations, can be significant barriers to increased self-sufficiency.Wagner, Newman, Cameto, Garza, and Levine (2005) found that youths with intellectual disability are less likely than youth with learning disabilities to get a job, but they are far more successful getting jobs than youths with visual or orthopedic disabilities. Young adults with intellectual disability greatly improve in employment 2 years out of high school, although African American youth with any disability are significantly less likely to be employed at this time than Caucasian youth with any disability. Two years out of high school, hours, pay-rate, and the type of jobs held by all youth with disabilities tend to improve, with a significant decline in personal care jobs and an increase in trade jobs like plumbing and carpentry. Other commonly held jobs include maintenance, food service, and retail positions.Although it is true that people with intellectual disability with higher IQs are more likely to be employed than people with intellectual disability with lower IQs, their employment rate (27.6%) is far below the national average in the general community (75.1%) and more often consists of part-time work, in entry-level service jobs, with low wages and minimal benefits (Yamaki & Fujiura, 2002). Transportation to get to work and back home continues to be a primary difficulty. Stancliffe and Lakin (2007) reported that the median income for this group “was 20% below the poverty threshold and about one-third of the median total income of the general population” (p. 437). Despite these bleak statistics, there is optimistic evidence that many of these people with intellectual disability with higher IQs can be gainfully employed in the community when given adequate training and on-the-job supports (Mank, 2007) and when they are supported to become more self-determined (Wehmeyer & Palmer, 2003)—that is, when they learn to assume more autonomy and make more personal choices in their lives.The majority of youth with disabilities (including intellectual disability) still live at home 2-years post–high school (Wagner et al., 2005). Compared with the general U.S. population, the income level of people with intellectual disability living on their own or with roommates is below the poverty level. “These individuals are simply too poor to afford even the most modest rental housing” (O'Hara & Cooper, 2005, as cited in Stancliffe & Lakin, 2007, p. 436). Although flexible housing supports exist for people with intellectual disability (e.g., rental assistance under Section 8 voucher programs from the Department of Housing and Urban Development), waiting lists are excessive and the application process is particularly challenging to these individuals (Galbraith, 2001). Compared with adults with disabilities other than intellectual disability, people with intellectual disability have lower rates of living independently (Blackorby & Wagner, 1996; Luftig & Muthert, 2005). Although more women with intellectual disability with higher IQs live independently than do men in the same category, this finding appears related to a higher marriage rate in these women than in men with intellectual disability (Blackorby & Wagner, 1996; Richardson & Koller, 1996). In other independent living areas, women with intellectual disability have less positive outcomes than do men in the same category (Rousso & Wehmeyer, 2001). For adults with intellectual disability who use disability services, Gardner and Carran (2005) reported low rates of independent living, a fact that may be related to the greater needs these individuals have and/or to service providers who find a lower risk for supporting individuals in group homes than in semi-independent settings. “People [with intellectual disability] in the formal service system live in more supervised environments than peers with similar abilities who are outside this system” (Stancliffe & Lakin, 2007, p. 434).People with intellectual disability and higher IQs tend to have higher rates of obesity, poorer nutrition, and are hospitalized more often and for longer periods than are adults with no intellectual disability (Stancliffe & Lakin, 2007). Health-related challenges for these individuals include accessing health services, affordability, transportation to services, communicating health problems to medical personnel, identifying their disability and their need for support in following health treatments, and inadequate or nonexistent medical histories (Spitalnik & White-Scott, 2000). Despite these problems, appropriate health supports can make a positive difference in healthy lifestyles (Stancliffe & Lakin, 2007).Greater loneliness in adults with intellectual disability with higher IQs was reported when individuals lived in larger residences and expressed fear about their living condition, whereas less loneliness was reported when people liked where they lived and reported more social contact (Stancliffe et al., 2007). Boys with intellectual disability with higher IQs have been reported to exhibit antisocial and delinquent behaviors more frequently than their male peers without intellectual disability (Douma, Dekker, Ruiter, Tick, & Koot, 2007). Despite these findings, behavioral interventions for challenging behavior have been demonstrated as being effective with this same group (Didden, Korzilius, van Oorsouw, & Sturmey, 2006).Similar to their peers without disabilities, a large majority of youth with intellectual disability (89%) were reported to be single 2 years after leaving high school (Wagner et al., 2005). Annual incomes of those who were married or living with a partner were $5,000 or less. Few of these people receive the social–sexual teaching that might assist them in their personal lives. Attempts to establish an intimate relationship with another person are often met with restrictions and fear (Walker-Hirsch, 2007).In a study analyzing where people with intellectual disability live in developed countries (e.g., U.S., Canada, Australia, Wales, England), Braddock and his colleagues found that the vast majority of children and a substantial fraction of adults with intellectual disability lived with their family rather than on their own or with others (Braddock, Emerson, Felce, & Stancliffe, 2001). In a survey of adults with intellectual and developmental disabilities, Brown, Renwick, and Raphael (1999) found that 46% lived with their families. When they do establish families of their own, it is well documented that families in which one or both parents have cognitive disabilities face greater challenges than other families in raising their children; however, positive outcomes can be enhanced if they receive appropriate supports to navigate adult living, maintain their family, and protect, support, and guide their children (Tymchuk, 2006).The ability to know one's rights and make those rights a reality depend on civic education and access to stable and knowledgeable advocates. The limitations in education described earlier result in many people who never have the opportunity to learn about democracy or rights with their classmates. A tendency by these individuals to deny their intellectual disability and reject services associated with intellectual disability may mean that their rights to supports or to just treatment are not exercised.Stancliffe and Lakin (2007) identified the additional support needs experienced by a significant subset of this group: guaranteeing justice for those “caught up in the justice system” and educating the police, lawyers, and judges who work with these individuals so that needed accommodations can be made (e.g., fair questioning). Very few legal resources exist for people with disabilities who do not have the finances or wherewithal to hire a private lawyer.Current research emphasizes the all-encompassing effects of poverty and unemployment on the lives of people with intellectual disability who are living independently (Stancliffe & Lakin, 2005). These research findings emphasize several influential characteristics of everyday living that often have a “tipping effect” on their individual lives and around which supports should be designed: (a) having a reasonable income and ongoing employment, (b) circumventing the restrictive and potentially stigmatizing regulations for acquiring social services, (c) accessing inexpensive transportation, and (d) obtaining affordable housing.Many researchers have found that individuals with intellectual disability with higher IQs are vulnerable to risks due to their sometimes inadequate response systems, interpersonal competence, social judgment, or decision-making skills (Greenspan, 2006a, 2006b; Khemka & Hickson, 2006; Nettlebeck & Wilson, 2001; Patton & Keyes, 2006; Spitalnik & White-Scott, 2000). These challenges are linked to reduced intellectual and adaptive abilities that make it difficult to problem solve and to be flexible in thinking; both limitations create a susceptibility to dangers that is shared among members of this group (Greenspan, 2006a). Some have argued that some aspects of these characteristics may represent a socialization process and may sometimes be viewed as adaptive responses to stigmatizing and deficient environments (Bogdan & Taylor, 1994; Goffman, 1961). It is likely that both processes are involved (reduced abilities and adaptation to one's life circumstances) in these susceptibilities and vulnerabilities.For some people in this group, these social judgment challenges may mask their disability temporarily, but ultimately these characteristics can contribute to their vulnerability. Research supports intervention to counter these characteristics, such as teaching appropriate interactions and self-managing conversations with typical peers (Carter & Hughes, 2007). Special educators and parents typically work with these individuals during the school years to teach suitable interpersonal relations, caution with strangers, and social skills while encouraging them to dress, talk, and act like their peers. Still, there is a scarcity of effective interventions regarding social judgment by adolescents with intellectual disability that effectively prevent abuse by acquaintances or strangers (Nettelbeck & Wilson, 2001) or that teach motivation-based decision making at a developmentally appropriate level (Khemka & Hickson, 2006).Next, we describe four contributors to inadequate social responding and judgment in individuals with intellectual disability who have some verbal and social skills: denial, a desire to please, gullibility, and naiveté or suggestibility.This factor was originally referred to by Edgerton (1967) as putting on the “cloak of competence.” Starting in 1960, Edgerton followed 110 adults who had been deinstitutionalized from Pacific State Hospital in Los Angeles between 1949 and 1958. This longitudinal study found that before being institutionalized, many of these individuals were told, in the terms of the era, that they had deficient intelligence (even though some may not have fit today's definition of intellectual disability); once in the institution, they had opportunities to enhance their damaged self-esteem by differentiating themselves from others with more extensive intellectual disability who also resided there, by forming friendships with individuals like themselves, and by feeling accepted by some employees. Deinstitutionalization presented them with a strong motivation to explain their hospitalization as due to “nerves,” surgery, alcoholism, and so forth, and to deny the stigma of the label of intellectual disability. Although “passing for normal” was motivated by an attempt to avoid the prior stigma of being identified as “retarded,” after leaving the hospital and returning to the real world, many of these individuals struggled with the presence of their incompetence.Today's motivation for denial by individuals with intellectual disability can come from attempting to avoid the possibility of being placed in self-contained, special education classrooms that are separated from the other students in the school or from being associated with activities or services that are openly linked to individuals with intellectual disability. Thus, denial of disability can emphasize one's social isolation and restrict learning opportunities, but may appear to many people with intellectual disability and their families as a way to reduce the stigma they experience. This denial of limitations may be accompanied by the tendency to exaggerate one's abilities. Individuals with intellectual disability may go to great lengths to hide their limitations, consuming significant effort to attempt to appear as their often-mistaken image of competent (Perske, 2005).People with intellectual disability tend to do what others want in a