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

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 or adaptive behavior (e.g., the classification of these should individuals with intellectual disability with higher IQs to into in different The of classification systems that are based on different criteria may for this group has many different of which are (e.g., p. by from definitions or classification systems (e.g., mental retardation and mental or of this group or an of this for example, the with & and the group of people with intellectual disability with higher IQs and people without intellectual disability but with IQs, whose IQs are beyond the intellectual disability Lakin, & In the have from the classification system or for classification system is is critical to that the challenges by individuals with intellectual disability who have higher IQs are and these challenges are in many ways to the challenges by the group of people with higher IQs (a) who may not be as having a disability or criteria for intellectual disability, but (b) who share many limitations in functioning with individuals with intellectual disability who have higher IQs and do these the and professional of these the is that the of these individuals are not in the are they to the mental disabilities service some may to the challenges of individuals with intellectual disability with higher IQs as to or sometimes those with intellectual disability at IQs. 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However, these to be more and in people with intellectual disability & because of their limited intellectual is not to this not all people in this group are not those who have However, many people with intellectual disability and higher IQs are not in the service system thus, do not have access to who them in to and help researchers have explained these in as less due to a of and more due to a of For example, many people with significantly limited intellectual ability and adaptive behavior may be in some in which is and and supports are in with (e.g., schools in which good education supports are or relative strengths in an with intellectual disability. the can be (e.g., with the of using a or a to identify is when at and can be (e.g., the to to a when to be and with all people with intellectual disability demonstrate all the supports help the that problems will from these with these individuals have some of their limitations with others and are to be challenges from based or 2006, p. to in they with to and in and frequently impose overwhelming challenges for many people with intellectual disability when they and that may be or These same individuals more and successful in and For these individuals with intellectual disability are they are formal or supports and As of from the of definition and is not in the relative of but in the relative of or to when and how to those support needs a limitation in human functioning as a of either personal or the in which the is (Thompson et al., p. et the need for supports in individuals with intellectual disability as an a a specific support needs a as these needs are many not but be from assessment and Individuals with intellectual disability people who the of to their of those supports are to individuals with intellectual disability, there are two (a) functioning in life activities in is but (b) their not the that they will in supports. supports for people with intellectual disability to with some success in life. supports people with intellectual disability not be to as in activities and process that et for planning individualized supports with planning to identify is to a with by services or by such as or limitations in a Stancliffe and and others also have that should be to all individuals with intellectual disability that and supports are individualized to needs. have also the importance of personal when supports for and and in the (Felce & Perry, not on assessment of needs but a between an needs and and the supports with this that service have in their of of providers to adults with intellectual disability, with and the these service systems from (a) due to low (b) to with intellectual disability, and (c) supports a service system that from service for groups of people in specific is or because is not associated with specific individuals or their & Lakin, 2007, p. all individuals with intellectual disability who the criteria this group into classification to needs for is with a classification system such as the Supports Intensity Scale (Thompson et al., that is not to develop or for individuals with intellectual disability with higher IQs or for those with intellectual disability with IQs stated to a specific classification system may be Intellectual ability is a for and individuals with intellectual disability. definition, all individuals with intellectual disability have significantly intellectual and adaptive at higher or all individuals with intellectual disability within the The from significantly intellectual are by the group of This of individuals with intellectual disability not that they all have needs, not the existence of or relative strengths in individuals with the an is for the is by classification of that into an or the in intellectual disability, with in and adaptive behavior assessment and of two below the in to different criteria for the group of individuals with intellectual disability, and to and identify them into groups intellectual disability and intellectual disability, for is not and may This of to the incorrect that individuals with intellectual disability with higher IQs have needs, and those with IQs have needs, of which for individualized supports. to and systems of supports and may be to have a of classification systems from which clinicians may choose that the (a) has a for and (b) has the to the of the classification Classification systems should be to purposes for individuals with intellectual disability into in this article, individuals who the of intellectual disability, whose functioning is sometimes referred to as (people with IQs above the ceiling of approximately 70–75) share much in common with individuals with intellectual disability who have higher IQs (slightly below the ceiling of approximately share many of the challenges and that life for people with intellectual disability. The Committee on the Committee for with Intellectual Disabilities in to the referred to this group of people who have mental and disability as or people with their this group of people may not access services because they do not for a disability or because they may not services for the same as individuals with intellectual disability with higher IQs (e.g., in the service and The identified many challenges this group despite the of an intellectual disability are to those by individuals with intellectual disability with higher IQs. These challenges are in the of the problems of individuals with limited intellectual ability are by in which there is of understanding by other people. with this of there is of or even of Thus, people with intellectual limitations life and of the school years, with their understanding of individuals with intellectual disability not but and with or less of with intellectual disability in general education the 2007), the for to between these and their are by and on the of a of school of with intellectual disability that people of the of people with intellectual disability. school children to have with their with intellectual to not with of to them as or less their and to that should be limited to because of education not in school do not to the needs of all children with from the of general and education and to the ways we schools and and address However, and that there is clear that individuals with intellectual disability can be changed in but not without a of the to in ways for to the of people with intellectual when people with intellectual disability who have needed supports are with individuals in the same who do not have needed supports. a with intellectual disability and with a higher who has and is supports for how to or Supports of of and with and with as as at school and home in these specific this can that and in and is less to be a without specific supports to be on others for and a higher of by supports on and assessment with and who have the to those supports and their of supports to an to address the demands in life and to a this article, we the group of individuals with intellectual disability who have higher IQs and the and challenges they face in life. life demands frequently impose overwhelming challenges to these people who live with significantly limited intellectual ability and adaptive Intellectual limitation exists along a continuum, revealing many similarities in human functioning limitations between individuals on either side of the definitional dividing line. professional that diagnosis of intellectual disability in a be by the assessment and of needed supports to that intellectual disability is to the functioning of the to the people whose IQs above the be to a to address their needs in a that intellectual disability along a continuum, as intellectual and be and understood in that with general on the criteria for intellectual disability, is critical to that people above the typically to those below the of their all individuals with intellectual disability have significant limitations in intellectual ability and adaptive behavior and supports that are to their needs and This need for supports not at the and adaptive behavior in the intellectual disability addition, we that individuals with intellectual disability with higher IQs face significant challenges in society all of life and that many individuals who may not formal of intellectual disability or who above the ceiling for a diagnosis of intellectual disability share this an understanding of the strengths and limitations of with intellectual disability can we and identify supports and with the of individualized supports in society. their and in this group of society accessible, and individualized supports that and on the strengths of these in good professional that diagnosis of intellectual disability in a be by the assessment and of needed supports to that intellectual disability is to the we that the to the people whose IQs are or above the be to a to address their needs in a This will by and relevant and professional The work of the and others be into this critical with Lakin, & The The and challenges of adults with limitations