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Chapter 1

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University of Guelph
PSYC 3850
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Intellectual Disabilities CHAPTER 1: Understanding Intellectual Disabilities • There is arrange of variability that is considered “normal” o Outside this range, differences are often extreme enough to attract attention • Some developmental differences may be so subtle at one point in time that they don’t attract attention but may become more evident at another time in the developmental lifespan • What may be considered a developmental limitation by one profession at one time, may be viewed otherwise by another profession at another time Historical Perspectives - Societies throughout the ages have been affected by intellectual disabilities, although the way people have viewed those having this condition has changed significantly over time - Many diverse concepts and varying characteristics have influenced different descriptions of people with intellectual disabilities, depending on society’s views and situational influences during any given time period - The concept of intellectual disabilities has been fluid and elusive for a variety of reasons, not the least of which have been the influences of economic, social and political climates of various cultures throughout history - Before 1800 having intellectual disabilities was not considered an urgent social problem in any society because those with more severe intellectual disabilities were either killed or died of natural causes at an early age o In some cases, those with disabilities were viewed as a drain on society and targeted for elimination, even in relatively recent times such as the mid-1900s - The earliest written reference to intellectual disabilities is dated 1552 BC - Human skulls dating to the Neolithic age indicate crude brain surgeries were performed – surgical procedures apparently were intended to cure abnormal behaviour; methods may have been based on the assumption that evil spirits caused strange behaviour and that opening a hole in the skull permitted them to escape o Regardless of the reason for these surgeries, the treatment often resulted in behaviour resembling diminished intellectual ability - Socioeconomic conditions have influenced human understanding and treatment of people with intellectual disabilities o Primitive tribes often looked on mental and physical differences with fear or as signs of disgrace because of the stigma associated with such conditions o Those with disabilities often represented an unbearable economic drain on the tribe – nomadic tribes couldn’t afford to be burdened by members who consumed limited food and water supplies but did not tangibly contribute to the common welfare o Those with intellectual disabilities were viewed as a wasteful extravagance the group could not afford - Throughout history, political authority has also been a force in determining the lot of people with intellectual disabilities – sometimes authority supported harsh treatment of individuals with disabilities, while at other times more humane approaches were in favor - Individuals with intellectual disabilities and those with other disability conditions have long been at the mercy of the more able majority - Neither religious nor economic perspective was conducive to the care of those with intellectual disabilities - Reproductive sterilization has periodically been a topic in the history of intellectual disabilities o Sterilization issue has been entangled with a number of other questions: nature- vs-nurture dispute, political and economic issues and moral and social debates o Some early genealogical studies were very influential at generating the sterilization controversy in the US  Henry Goddard (1913) – traced decedents of a Revolutionary War soldier to whom he gave the pseudonym Martin Kallikak  Kallikak had sexual relations with a barmaid and fathered a child and decedents of this union were reported to be primarily thieves, prostitutes, and other social undesirables  He later married a “normal” woman and their decedents were purportedly normal and in some cases, superior  Resulting conclusion was that because of genetics, one group was doomed to a life of degeneracy, while the other was almost certainly destined to be successful - Godder’s report fostered a sterilization movement in the early part of the 20 century - Fear of intellectual disabilities promoted widespread support for the methods that would “control” it, among them sterilization and isolation - Institutions became custodial to protect society and prevent reproduction DISCIPLINES AND PROFESSIONS Disciplinary Perspectives and Contributions - In many ways, people with intellectual disabilities are similar to the individuals without disabilities – their need for love, independence, support and respect is the same as everyone else’s and everyone benefits from the service contributions of such professions as medicine, education, psychology, sociology etc., although those with intellectual disabilities will likely benefit to an even greater degree - There are multiple professions involved in the field of intellectual disabilities – the delivery of services and understanding of individuals with intellectual disabilities are far beyond the scope of any single discipline - Communication and collaboration are crucial for professionals in all disciplines – communication process depends on building trust and being committed to information sharing as well as improving the child’s program Terminology - From characterizing intellectual disabilities as a genetically determined and incurable condition, professionals have moved toward a more fluid conceptualization that includes biomedical causes, as well as environmental and social factors in determining whether someone has or does not have intellectual disabilities at a given time - The term “intellectual disabilities” includes a wide range of behaviour – it shares with other such “people-labeling terms” the attribute of being a convenient, generalized expression about persons of groups - Intellectual disabilities is both a label of fact and a label of conjecture (an opinion or conclusion formed on the basis of incomplete information) o A label of fact must be quantifiable and verifiable (as a label of fact, intellectual disabilities must demonstrate observed characteristics that are verifiable and quantifiable, perhaps determined by a biomedical diagnosis) o A label of conjecture may include concepts that are as yet only hypothesized - Only about 20% of intellectual disabilities is caused by biomedical factors and for the remaining 80%, the actual cause is uncertain, therefore, intellectual disabilities is also a label of conjecture - Incidence of milder forms of intellectual disabilities is much higher for people from lower socioeconomic backgrounds - The orientation of a discipline affects its view of people with intellectual disabilities o Each discipline, at least initially, sees a person with intellectual disabilities from its own perspective but such a view should not preclude different professions from at least being aware of and appreciating the contributions of their colleagues in related areas - Tools (e.g. IT) are only as helpful as the people that use them – the focus must be on the core issues and problems to be solved, not on the technology itself Contributions of Biological and Medical Sciences - An intellectual disability as a label of fact is best exemplified as most frequently related to a biomedical cause, however, even when the condition if readily identifiable, the cause is not always clear - Medical professional have long been involved with intellectual disabilities in a number of ways o A physician is frequently the first professional to identify, diagnose and counsel parents of children with intellectual disabilities - It is not unusual for physicians to view intellectual disabilities from a physiological perspective – physicians frequently have not had sufficient background to understand the nonmedical ramifications of this condition; this limited view may limit their effectiveness in working with a family - Medical research is another important area of medicine that warrants attention o Advances in medical research have had a dramatic impact in several areas related to intellectual disabilities o It has become possible to implement procedures that prevent some forms of intellectual disabilities but to reach this point, interdisciplinary collaboration was required - Advances in genetics have opened avenues that will allow professionals to prevent many forms of intellectual disabilities o At present, some forms of intellectual disabilities are preventable before conception (e.g. genetic screening) Contributions of the Behavioural Sciences - Although behavioural sciences have made important contributions to the understanding and treatment of intellectual disabilities, most have dealt with it in only a limited fashion, and each field generally has operated independently and within the confines of its own terminology and parameters – the consequent reduction in effective contributions to education about and treatment of intellectual disabilities exemplifies the importance of interdisciplinary collaboration - Psychology has been the behavioural science most directly involved in the scientific study of intellectual disabilities - 3 important areas to which psychology has contributed are: a) Intelligence theory and testing b) Learning theory research c) Interpersonal social aspects - Historically, anthropology has focused relatively little attention on intellectual disabilities, yet it has offered some extremely important insights into the broader perspective of the condition o Early work by Edgerton (1968) described the anthropological study of intellectual disabilities as nonexistent and argued for drastically expanded efforts – Edgerton’s continued effort represents important anthropological contributions and has added considerable information about the adaption of people with intellectual disabilities to their environments - Anthropology offers some intriguing possibilities from the standpoint of research methodology o The major anthropological approach to research represents qualitative research methods, emphasizing observation and recording of information about people in their environment – this is a substantially different approach from that historically used in the study of intellectual disabilities - Anthropology is a discipline that has not been broadly involved in intellectual disabilities but one that may make substantial contributions in an interdisciplinary effort - Sociology has been investigating intellectual disabilities, at least tangentially, for years o A number of authors have examined disabilities from sociological perspectives and concepts of social competence and deviance – in many cases, authors discuss the need to view disabilities from a sociological perspective rather than from the traditional clinical model o The full contribution of sociology to the understanding of intellectual disabilities in a larger societal framework remains untapped - The law has also been an important force in the area of intellectual disabilities – the legal profession, in comparison to other professions, tends to operate in an adversarial role Contributions of Education - Educators do not have the luxury of viewing the world from a restricted framework or retreating behind disciplinary fences when faced with the multidisciplinary needs of those with intellectual disabilities - The role of education in intellectual disabilities is one of providing effective research- based instruction - The contributions of education in aiding the understanding of intellectual disabilities has been to: a) Identify needs b) Stimulate research and theory c) Coordinate and deliver instruction and related services - Identifying children with intellectual disabilities was one of the earliest efforts of education o First intelligence test worthy of the name was developed by Alfred Binet o Task was to develop a way to determine which children are likely to fail in school programs and need special help; therefore, the measurement of intelligence has been influenced by educational needs, rather than by the interests of the discipline - Social factors were also important in determining a child’s present and future performance levels – professionals have since been introduced to the concepts of adaptive behaviour and social intelligence - The need to understand mild intellectual disabilities has influenced research efforts to increase knowledge about the importance of environmental influences on intelligence - The development of secondary school programs has created a need for appropriate curricula and has prompted research on many different factors related to community placement for adolescents and young adults with intellectual disabilities - Educators stimulate the efforts of disciplines and then using their findings for the betterment of society Disciplinary Collaboration - It is evident that isolated efforts within a profession, without interdisciplinary collaboration, often result in less effective service delivery to people with intellectual disabilities - The different professions are making progress toward bridging the gaps among their perspectives; at least two factors have prompted this progress: o Experience has shown that people with intellectual disabilities being served are the ultimate beneficiaries of improved cooperation o The realization that something can be done to promote interdisciplinary collaboration - When knowledge is limited to a single field, differences in perspective result - The acquisition of enough information to understand another perspective broadens professional viewpoints and focuses efforts on the person needing service - Beyond the professional and discipline level, similar cooperative efforts are essential in state service and political arenas - Interdisciplinary cooperation is also important at the practitioner level – the contact point between the service-delivery system and the person with intellectual disabilities - Inclusion: an educational placement approach for children with disabilities that involves educating a significant number of such children in general education classrooms o When this has been accomplished properly, it has been based on a thorough functional analysis of the child’s skills and abilities along with an examination of the curriculum, personnel, and other elements present in the classroom Intellectual Disabilities as a Concept - Over the years, definitions have encountered difficulties trying to incorporate advances in conceptual understanding and social progress while attempting to maintain measurement usefulness and accuracy - Clarifying the concept of intellectual disabilities has become more complex as previously unknown factors are taken into account - Intellectual disabilities always implies reduced level of intellectual capacity and the concept of intelligence has played a central role in defining intellectual disabilities o Every controversy about the nature of intelligence has a direct impact on the field of intellectual disabilities, thus part of the difficulty in defining intellectual disabilities relates to the notion of performance and measurement of intelligence - Social competence has been an important element of most recent definitions of intellectual disabilities - Intellectual disabilities has always been an area of interest and study for many professions and this has also contributed to the challenges of definitional and conceptual clarity o The various definitions and classification systems of these disciplines tend to focus on the constructs of a particular profession rather than on the affected individual o Sociologists set out to study intellectual disabilities as a social challenge, psychologists examine it as a psychological condition, physicians treat it as a medical condition etc. - Intellectual disabilities need to be examined from a multidisciplinary perspective, while still focusing attention on the individual at hand - Preparation of professionals who work with those having intellectual disabilities has been hampered by definitional issues – education and training is much more difficult in the absence of a concept of intellectual disabilities that is logical, theoretically sound and yet functional in field settings - Individuals with intellectual disabilities must be viewed as developing human beings with varying needs and characteristics, living in a fluid and complex society - Human development is an excellent framework for examining intellectual disabilities – it serves effectively across disciplines, causes, and the full range of human life Intellectual Disabilities: A Definition in Transition - Definitions of intellectual disabilities have varied widely over the years among disciplines - The definition of intellectual disabilities is currently in a transition period - Similarly, the language being employed is evolving with different descriptions of this complex condition - The American Association on Mental Retardation (AAMR) definition of “intellectual disabilities” is: “Mental retardation is a disability characterized by significant limitations both in intellectual functioning and in adaptive behaviour as expressed in conceptual social, and practical adaptive skills. This disability originates before age 18.” o This definition provided by its assumptions (p.19-20), stress the functioning of a person with intellectual disabilities within home, school and community environments - The importance of adaptive behaviour and inclusion in the community has been evident in the intellectual disabilities literature o However, the measurement of adaptive behaviour has always been a challenge, not achieving the desired precision despite the significant and continuing research efforts - Adaptive behaviour is a very important concept in the most recent AAMR definition o Concerns about assessment accuracy continue, as do apprehensions regarding implementation and growing evidence regarding overrepresented ethnic minorities among those diagnosed with intellectual disabilities o Response to these concerns is reflected in the narrative of the 2002 AAMR definition – future implementation of this definition will determine the degree to which it can be translated into effective action - Individuals’ behaviors are considered adaptive to the degree they manage personal needs, display social competence and avoid problem behaviors - The AAMR definition focuses adaptive behaviour assessment by specifying that it be “expressed in conceptual, social and practical adaptive skills” - The manifestation of the adaptive behaviour skills emphasizes how well an individual actually shows adaptation in the context of his or her environment – diagnosing an individual as having intellectual disabilities using this definition means that the assessment of adaptive behaviour must focus on the expression of adapting in practical terms, which requires some significant assumptions about adaption and its measurement (p.21) - One perspective of a person with intellectual disabilities is a person who relies on some protection and support from the family/community o Two factors enter into this perception: a) The deficits/level of functioning of the individual with intellectual disabilities b) Threshold of community tolerance o The kind of action taken depends on the degree to which an individual deviates significantly from community norms – from those zones of behaviour/performance society deems acceptable o The 2002 AAMR definition conceptualizes intellectual disabilities in this manner – “in the context of his or her environment and the supports that are in place” - People with intellectual disabilities often come to the attention of someone in their community because they act or look differently enough from the norm to be noticeable – this is true regardless of the degree of disability o Identification of the individual with a more severe disability may occur at birth or very early in life – this identification usually happens because a physical or behavioural anomaly is already evident at this stage of development o For those who differ less obviously form the norm, identification may not occur until they begin to develop language or enter school - Recently, there has been an intense focus on the person with intellectual disabilities within the community o An organization known as TASH (formerly the Association for Persons with Severe Handicaps) has developed advocacy position statements relating to life in community settings and supports should be available for inclusive and integrated life in the community  Although these perspectives are based on philosophies of civil rights, dignity and social justice, they are also aligned with human development research that has emerged over the years  TASH supports realistic life in the general community, inclusive and early educational experiences, as well as promoting quality and best practices in all services and the development of inclusive public policy on health care matters - Another organization working in intellectual disabilities is the IASSID (International Association for the Scientific Study of Intellectual Disabilities) o It reflects a perspective that emphasizes issues facing an individual within the community o These perspectives take the study of intellectual disabilities directly into the community and emerge with some of the same issues facing all of us Incidence and Prevalence - Incidence: refers to the number of new cases identified during a given time period (often 1 year) o Tabulating (arranging in tabular form) incidence involves a count of all individuals identified as having intellectual disabilities during that period, whether newborns of youngsters diagnosed in school - Prevalence: refers to all cases existing at a given time, including both newly identified cases and cases still labeled as having intellectual disabilities from earlier diagnosis - These two kinds of counting do not result in the same number, but the terms have often been used rather loosely, sometimes interchangeably, in the literature – whenever possible, incidence and prevalence are examined separately - Inconsistent definition and classification schemas over the years have made the problem of determining frequency of intellectual disabilities even more formidable, particularly form a cross-cultural perspective and for those who have other disabilities that are co- occurring - Those with a more mild disability represent by far the largest proportion of the intellectual disabilities population – Hardman et al (2006) estimated that about 0.75% of the total population was mildly affected, which represents about 90% of those diagnosed as having intellectual disabilities - The 2002 AAMR definition does not employ a classification system regarding degree of disability based on IQ level (mild, moderate, severe/profound), electing to focus on the intensities of supports needed – the approach taken suggests varying levels of intensity for the supports needed by an individual with intellectual disabilities - Four intensity levels of supports are outlined in following manner: a) Intermittent: supports are provided a
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