Chapter 1 of the book Understanding and Preventing Intellectual Disability

Chapter 1 of the book Understanding and Preventing Intellectual Disability by Evelyne Pannetier covers the fundamentals of intellectual disability (ID), particularly its understanding and how to prevent it. This chapter provides an overview of the causes, manifestations, and classification of ID, while emphasizing the importance of early intervention and prevention to limit its impacts. Concise Summary Intellectual disability is defined as a condition that affects an individual’s intellectual and adaptive development before the age of 18. This chapter explores the multiple causes of ID, which include genetic factors (such as Down syndrome) and environmental factors (such as prenatal malnutrition or infections during pregnancy). Pannetier classifies intellectual disability into four levels of severity: mild, moderate, severe, and profound, based on the impact on adaptive functioning. The text also emphasizes the importance of prevention strategies, such as prenatal care, education of future parents, and access to quality care, to reduce cases of ID. Justification for the choice of text This text was selected for its relevance in the educational setting, as it provides an essential theoretical basis for understanding the challenges related to intellectual disability. For teachers and stakeholders working with learners with ID, this chapter offers a better understanding of the causes and manifestations of ID, while explaining the importance of adapted educational interventions. In addition, the text addresses the importance of prevention, an essential aspect for limiting the impact of the disability on students’ daily lives, which directly echoes the challenges faced by educators. Identification of challenges Challenge 4 – How to get each actor/learner to strengthen their feelings of autonomy and actively participate in the management of the teaching-learning process? This challenge is relevant because one of the main objectives of intervention with people with ID is to promote their autonomy. The chapter highlights the importance of prevention strategies and educational approaches to help people with intellectual disabilities develop their independence. Educational interventions must encourage the active participation of the learner in their own journey, even if it presents significant limitations. Challenge 5 – How to encourage each actor/learner to aim for mastery of their learning and self-improvement? This challenge is directly linked to educational practices that aim to maximize the potential of students with intellectual disabilities. The text emphasizes the need for a personalized educational approach, allowing each individual to progressively master their learning, at their own pace, and to aim for a form of self-improvement, despite the obstacles posed by ID. Main ideas The text presents several key ideas that shed light on how educators can approach intellectual disabilities: Definition and classification of ID: The chapter begins by clarifying what intellectual disabilities are, explaining that they include limitations in both intellectual abilities and adaptive abilities. Multiple causes: ID can be caused by genetic factors, environmental factors, or perinatal complications, which highlights the complexity of this condition. Importance of prevention: A central point of the chapter is the importance of prevention. By intervening early, particularly with prenatal care and appropriate education of future parents, the risks of intellectual disability can be reduced. Pedagogical approaches: The text highlights the importance of educational interventions adapted to the different levels of disability, allowing teachers to better meet the needs of students while helping them develop their autonomy and actively invest in their learning. Strengths of the text Évelyne Pannetier’s text has several notable strengths: Clarity and accessibility: It is written in a clear manner, allowing readers to easily understand the complex concepts related to intellectual disability. This makes it a valuable tool for teachers and stakeholders who must appropriate these notions to better support their students. Educational relevance: The chapter provides information that is directly applicable to teaching and intervention in an educational setting, offering avenues for reflection to better adapt teaching practices to the needs of students with ID. Overall approach: The text combines a theoretical understanding of ID with practical suggestions for prevention and intervention, making it Chapter 1: summary of page 1: This page begins with a general definition of intellectual disability, specifying that intelligence, although measurable, represents only one aspect of a more complex structure. The author is interested in intelligence as an abstract entity, difficult to define and to grasp. Intelligence, a complex organ Intelligence is defined as the ability to understand the world around us and to use mental functions to acquire knowledge. Intelligence, perceived as a characteristic of humans, is differentiated from animals, although this subject remains debated. The author refers to Alfred Binet, who, as early as 1905, insisted on the abilities to judge, understand and reason well as central elements of intelligence. Wilhelm Stern, for his part, spoke of a “general conscious capacity” to adapt to the new demands of life. Finally, intelligence is influenced by genetic and environmental factors, both of which play a determining role. The relationship between nature and culture is also explored, highlighting that the mental adaptability needed to live in a technological environment, such as a modern megacity, is different from that needed to survive in more natural or primitive settings. summary of page 2: This page covers two main sections: the different forms of intelligence and the possibility of measuring it. Diversity of intelligences The author discusses the diversity of intelligences within similar cultures and environments, explaining that each individual has their own modes of interaction and learning. Recent research has led to the emergence of multiple forms of intelligence, such as emotional, visual, auditory, or mathematical intelligence. However, the author points out that these distinctions are more used to understand the diversity of learning styles than to define intelligence itself. Can we measure intelligence? The second part of the page deals with the measurement of intelligence, the first attempts of which date back to the beginning of the 20th century, in the context of industrialization. The author traces the history of the metric scale of intelligence, designed by Alfred Binet and Théodore Simon in 1905 to assess the abilities of children with learning difficulties in France. This scale measured judgment, comprehension, and reasoning skills for children ages 3 to 12. The concept of “mental age” was introduced in 1908, comparing children’s scores with an expected mental age. Later, in 1916, Stanford professor Lewis Terman introduced the idea of ​​the intelligence quotient (IQ), which measures intelligence by dividing mental age by chronological age and multiplying that ratio by 100. Summary of page 3: This page continues to explore the measurement of intelligence, detailing the development of intelligence quotient (IQ) measurement scales. Stanford-Binet and the Wechsler Scales The author begins by explaining that the Stanford-Binet scale, introducing the mean IQ of 100 with a standard deviation of 16, remains a reference for assessing intelligence, even with modern revisions. Next, David Wechsler is introduced as the creator of the most widely used IQ scales today. Born in Romania, Wechsler developed these tests after arriving in the United States, introducing the use of Gaussian normal distribution and a standard deviation of 15 to better measure adult intelligence. His first scales, designed in the 1930s, have evolved over the years to include different populations (children, adolescents, adults). The different Wechsler scales The main Wechsler scales mentioned are: WPPSI-III: for children aged 2 years 6 months to 7 years 3 months (2002 version). WISC-IV: for children aged 6 to 16 years 11 months (2003 version). WAIS-III: for adults aged 16 to 89 (1997 version), with the WAIS-IV version currently being adapted at the time the text was written. Calculation of IQ The author specifies that the intelligence quotient is no longer calculated as a strict quotient, but as a sum of weighted scores obtained on several tests. These results make it possible to calculate different types of IQ: Verbal intelligence quotient (VIQ), Performance intelligence quotient (PIQ), Total intelligence quotient (TIQ). Finally, she mentions that advances in neuropsychology have led to the addition of additional components, such as the verbal comprehension index or the perceptual reasoning index, which are part of the five indices used to assess intelligence in current tests. Summary of page 4 : This page continues the analysis of the indices used to measure the intelligence quotient (IQ) and introduces a reflection on the evolution of intelligence over the generations. Intelligence measurement indices Two new indices are mentioned: 4. Working memory index, which evaluates the ability to resist distractions. 5. Information processing speed index, which measures the speed of processing data. These indices are used in particular to evaluate disorders such as ADHD (attention deficit hyperactivity disorder) and learning difficulties. The evaluation of psychometric tests evolves over time, raising the question of the relevance and validity of these tests in a specific cultural and scientific context. Are we smarter than our grandparents? The author addresses here an often debated question: the evolution of intelligence across generations. She cites studies that show an increase in IQ scores since the early 20th century, a phenomenon known as the Flynn effect. The latter highlights an increase of about 3 to 5 points per decade in intelligence tests between 1932 and 1978, with a total increase of 13.8 points among Americans over this period. Similar data have been found in other countries such as Canada, France, Belgium, and Switzerland. The author concludes by noting that this increase is more pronounced in verbal tests, raising questions about the nature of intelligence measured and changes in learning and thinking patterns over time. Summary of page 5: This page concludes the discussion of improving IQ scores in different populations and begins to address the definition of intellectual disability. Improvement in Intellectual Level The author mentions three key points regarding the improvement in IQ scores: General improvement: This improvement varies by country, with a particularly notable progression in Japan, followed by Belgium, the Netherlands, and Canada. Variation by socioeconomic level: Even in countries with high socioeconomic levels, the improvement in general IQ differs. Impact on individuals with low-average scores: The improvement is particularly marked in individuals whose IQ was in the low average, with a narrowing of the scores. The author concludes that even if we are not necessarily “smarter” than our ancestors, our intelligence has changed over time. It would therefore be necessary to adapt intelligence tests to this evolution. Definition of Intellectual Disability The page then introduces the definition of intellectual disability, specifying that it involves a significant reduction in functioning in two main areas: intelligence and adaptive behavior. Intelligence is defined as the ability to understand the world and use mental functions to acquire knowledge. Adaptive behavior is the ability of an individual to meet the demands of everyday life. To diagnose intellectual disability, there must be a limitation in at least two specific areas of adaptive behavior, such as: Communication, Self-care. This basis allows us to establish the diagnostic criteria that will be developed later. Summary of page 6: This page covers two main topics: the criteria for diagnosing intellectual disability and a brief history of the condition. Diagnostic criteria for intellectual disability Intellectual disability and abnormalities in adaptive behavior must manifest before the age of 18. This excludes neurodegenerative diseases such as Alzheimer’s. In developing children, it is preferable to speak of global delay until the limitations are clearly established. If the disability is severe, it is often detected early, while mild forms require more time and evaluations for an accurate diagnosis. Recent conferences have added precisions to the diagnosis, which must take into account several considerations: Influence of the community environment: Limitations must be seen in their context. Cultural and linguistic diversity: The assessment must take into account sensorimotor, behavioral, and communicative differences. Strengths and weaknesses: Limitations coexist with abilities. Description of limitations: This step is essential to determine the support needed. Adapted support: With personalized and constant support, the abilities of the person with a disability can improve. History of intellectual disability Intellectual disability has always existed in human societies, but it has often been perceived negatively, which has obscured the reality of this condition. Over the last century, pejorative terms such as “imbeciles” or “idiots” have been used to refer to people with intellectual disabilities, insults that have evolved in language, losing their original meaning over time. Summary of page 7: This page discusses the evolution of the vocabulary regarding intellectual disability, as well as the different levels of intellectual disability and the associated assessment challenges. Evolution of the vocabulary Historically, the term “mental retardation” was used, but in the era of political correctness, it took on a pejorative connotation, which led to a change in terminology. It was also wanted to avoid confusing “mental retardation” with mental illness, which was common in the popular mind. The author explains that the notion of “retardation” gives the erroneous impression that the disabled person is simply behind in a race that he or she could catch up in, when the reality is much more complex. Interest in intellectual disability really took shape in 1908, with the emergence of the idea of ​​a permanent disability, rather than a temporary delay. Until 1973, the definition was extended to the observation of developmental periods, including from conception to birth. The different levels of intellectual disability The author mentions the debates surrounding the scoring of the intelligence quotient (IQ) and the reservations about how to interpret these results. She emphasizes the importance of ensuring that the results are not distorted by external problems, such as language difficulties, sensory disorders (auditory or visual), or motor disorders, which could affect performance without reflecting an intellectual disability. In addition, the conditions in which the tests are administered can disturb the subject (for example, being in an unfamiliar environment), which can also influence the results. The author concludes that behavioral disorders or pathologies can also make the results invalid or difficult to interpret, thus highlighting the limitations of these tests. Summary of page 8: This page discusses the distribution of intelligence quotients (IQs) in a population and how intellectual disability is diagnosed based on this distribution. Gaussian Curve and Intelligence Quotient The author explains that IQ tests are used to situate an individual in relation to the general population. The distribution of IQs follows a bell curve, called a Gaussian curve, where the highest point corresponds to an IQ of 100, which is the average. The majority of the population (68%) has an IQ between 85 and 115, and 95% of individuals have an IQ between 70 and 130. Intellectual Disability Intellectual disability is characterized by an IQ below 70, which represents approximately 2.3% of the population. However, not all people with an IQ below 100 are considered intellectually disabled. To diagnose a disability, the IQ must be below 70, or two standard deviations below the mean, and the person must also have limitations in adaptive abilities. Intellectual disability can be a burden for the person affected as well as for those around them and society. Indeed, people with severe or profound intellectual disability will often remain dependent on the help of others. Levels of disability The assessment of IQ according to the Wechsler scales makes it possible to distinguish four levels of intellectual disability, based on standard deviations below the mean. An additional standard deviation below 70 defines the levels of severity of the disability (mild, moderate, severe, profound). Summary of page 9: This page describes the four levels of intellectual disability, based on the intelligence quotient (IQ) and standard deviations from the norm, while referring to the DSM-IV for classification. The four levels of intellectual disability: Mild intellectual disability (MID): IQ between 55 and 70. This form is the most common, representing 85% of cases. It is more common in boys (1.6 boys for every girl). Often associated with unfavorable socioeconomic conditions, it is also linked to fewer health problems than other forms, such as epilepsy. Moderate intellectual disability (MID): IQ between 40 and 55. This represents 10% of disabilities. Distributed equally between the sexes, it is often linked to genetic pathologies causing organic dysfunctions. Severe intellectual disability (SID): IQ between 25 and 40. This affects about 3% of disabilities and is usually related to genetic problems or neurological dysfunctions. Profound intellectual disability (PID): IQ below 25. It accounts for about 2% of cases and is often related to severe neurological and organic disorders. PID is equally distributed between genders and social classes. DSM-IV Summary Table The table shows the four degrees of intellectual disability, based on IQ, standard deviations, and population distribution. PID is by far the most common, and intellectual disability affects boys more often than girls, with a ratio of 3 boys to 2 girls. This classification is widely used in North America to diagnose intellectual disability, whether permanent or temporary. Summary of page 10: This page covers two main topics: the need for consistency in IQ assessments to diagnose intellectual disability and the different types of adaptive functioning, starting with communication. Consistency in IQ assessments Psychologists emphasize the importance of considering the notion of consistency in IQ subtest scores. A “flat” profile, where all intellectual functions are equally affected, is necessary to diagnose intellectual disability. Sometimes, children may have impairments in a specific function (e.g., verbal communication in dysphasia) but perform well in other areas. If these children have an average IQ below 70, they should not automatically be considered to have mild intellectual disability (MID) if their adaptive functioning is good in other areas. Different types of adaptive functioning Adaptive functioning concerns different areas of daily life. These areas are not always all affected in the same person. This section begins by exploring communication, which includes verbal and nonverbal communication. Verbal Communication: Includes expression and understanding through speaking, reading, and writing. These processes require the coordination of the muscles of speech and hearing to function properly. Nonverbal Communication: This includes emotional expression and understanding, through gestures, facial expressions, or other means such as music or drawing. The author emphasizes the importance of these types of communication for exchanges with others, whether verbal or nonverbal. Summary of page 11: his page continues to describe the different domains of adaptive functioning, focusing on self-care, domestic skills, and social skills. 2. Self-care Normal child development includes progression toward independence in self-care to ensure well-being and hygiene. Children learn to control their sphincters, use toilet paper, bathe themselves, dress themselves, and choose clothing according to the seasons and circumstances. They also progress in using eating utensils, starting with a spoon, then a fork and knife. These skills are grouped under the activities of daily living (ADLs). 3. Domestic skills As children get older, they begin to participate in household tasks around the home, such as making their bed, taking out the trash, or doing the dishes. These skills develop through imitation and education (for example, learning to start a lawnmower or dry the dishes). These tasks are grouped under the activities of domestic life (ASL), because they prepare the child for a future adult life. 4. Social skills This domain groups together the social behaviors that allow living in society. These skills include understanding the rules of politeness, knowing when and how to greet, or giving up one’s seat to an elderly person on the bus. These behaviors vary according to cultures (for example, the manner of greeting in North America and Japan). Learning social rules is influenced by exposure to social events, which differs depending on whether the child lives in a family or a foster home. Summary of page 12:This page continues the description of the different types of adaptive functioning, addressing the use of community resources, autonomy, health and safety, and academic skills. 5. Use of community resources The author explains that society has put in place a set of resources to facilitate daily life. This includes sending a package, using public transport, accessing health services or going to a library. These skills are acquired through family or school activities and are essential for integration into society. 6. Autonomy Autonomy is defined as the ability to manage daily activities alone, without depending on others. This includes managing one’s pocket money, planning tasks such as shopping, and making personal decisions. Developing this autonomy is crucial to avoid long-term dependence on those around oneself. 7. Health and safety Health management includes the ability to cope with common health problems (such as infections or injuries) and adopting safe behaviours to avoid accidents. From childhood, parents and educators teach children rules to avoid dangers, such as not touching hot objects or crossing the street safely. These habits develop gradually to maintain bodily integrity. 8. Academic skills Academic skills concern the knowledge and skills acquired at school. The education system is responsible for providing a knowledge base to enable children to develop their intellectual abilities and integrate socially. summary of page 13: This page discusses the aspects of leisure, work, and the role of adaptive behaviors in the context of intellectual disability. 9. Leisure and work The author explains that leisure, whether practiced alone or in a group, is essential at any age. For children, activities such as cycling, video games, or team sports (for example, hockey) provide entertainment and socialization. These activities continue into adulthood, contributing to social integration. The link between school and work is also emphasized. School attendance with its schedules, rules, and rewards prepares children to enter the labor market. Work not only offers financial autonomy, but also strengthens independence and personal organization. Adaptive behaviors and intellectual disability Intellectual disability often affects several areas of adaptive functioning. Children with deficits in these areas may require help and support to compensate for these deficiencies. Scales such as the Vineland Social Maturity Scale or the Échelle québécoise de comportement adaptatifs (EQCA) are used to assess children’s strengths and weaknesses. These assessments, based on feedback from parents or teachers, measure social skills, inappropriate behaviours, and the child’s ability to adapt to the demands of daily life. These tools help to understand the severity of the disability and the needs in terms of interventions and support. Summary of page 14: This page presents a histogram of the adaptive levels assessed by the Échelle Québécoise de Comportements Adaptatifs (EQCA). It illustrates the differences between various domains, such as autonomy, social skills, and work, for different degrees of impairment (no deficit, mild, moderate, severe, profound). Key points: Stability of adaptive scales: Unlike IQ measurement scales, which evolve over time, adaptive behavior scales remain relatively stable, as shown by Vineland’s studies. Differences between IQ and adaptive behavior: IQ is measured through tests administered to the individual, while adaptive behavior is assessed based on observations made by the individual’s entourage (parents, teachers, social workers). This assessment is therefore broader and integrated into social contexts. Evolution of adaptive functioning: Adaptive skills evolve as the person matures. However, in the case of intellectual disability, these skills evolve more slowly, and the more severe the delay, the more the dependence will persist in adulthood. The histogram illustrates these gaps according to several spheres of life (autonomy, social skills, work, etc.), showing how each level of disability affects the domains of adaptive functioning differently. Summary of page 15: This page presents a table describing the levels of functioning according to the degree of intellectual disability (DIL, DIM, DIS, DIP) and the different stages of development, ranging from early childhood to adulthood. Levels of impairment: DIL (Mild Intellectual Disability): 0-5 years (maturation and development): Little difference with normal children in terms of motor skills and communication. 6-21 years (learning and education): Schooling with support, end of primary school reached. > 22 years (social adaptation): Possible autonomous social functioning, adapted work with routines. DIM (Moderate Intellectual Disability): 0-5 years: Slow development of communication and motor skills depending on the cause of the disability. 6-21 years: Schooling in a specialized environment, development of autonomy, level reached: beginning of primary school. > 22 years: Functioning in familiar environments with simple work under supervision (sheltered workshops). DIS (Severe Intellectual Disability): 0-5 years: Poor motor development, severely impaired communication. 6-21 years: Routine learning, hygiene training, level achieved: preschool. > 22 years: Partial autonomy with supervision, no paid work, minimal personal protection skills. DIP (Profound Intellectual Disability): 0-5 years: Minimal motor functioning capacity, very little interaction, no language. 6-21 years: Response to minimal training for personal autonomy, very limited beginning of language. > 22 years: Extremely limited mobility and language, total dependence. This table illustrates the impacts of each degree of intellectual disability on motor development, communication, autonomy and social integration at different ages. summary of page 16: This page covers the generalities of health prevention, defining three levels of prevention, and highlights their importance in the management of medical and psychosocial risks. General definition Prevention is defined as the set of measures taken to avoid a danger or risk, whether physical or psychological, and is essential to prevent the onset or worsening of diseases. The three levels of prevention Primary prevention: It aims to prevent the onset of a disease or pathological condition. Examples include vaccination (hepatitis B) and social measures such as accessibility to housing to avoid homelessness. Secondary prevention: Its objective is to minimize the impact of a problem once it is detected. This includes early diagnosis and management, with actions to prevent the spread of a disease. For example, prescribing antibiotics for meningitis or public health measures during a flu epidemic. Tertiary prevention: It consists of limiting the consequences of an existing disease or problem, by rehabilitating affected individuals so that they can return to a normal social, academic, or professional life, while preventing recurrences. Individual and collective responsibility Prevention is both individual and collective. States have the responsibility to ensure public health through structures such as health ministries, but individuals also have a role to play, for example by avoiding alcohol consumption during pregnancy. The page mentions that Table 1.3 illustrates these levels of prevention in relation to intellectual disability Summary of page 17: his page presents Table 1.3, which illustrates the different levels of prevention applied to intellectual disability (ID) with concrete examples. Types of prevention and examples related to ID: Primary prevention: Objective: Eliminate a cause of intellectual disability. Individual measures: Stop drinking alcohol during pregnancy. Collective measures: Limit the lead content in paints. Secondary prevention: Objective: Reduce the impacts of the identified cause. Individual measures: Take folic acid during pregnancy, for women taking antiepileptics. Collective measures: Ensure access to specialized care for head injuries. Tertiary prevention: Objective: Mitigate the consequences of the cause. Individual measures: Early rehabilitation of deficits (speech therapy, specialized education). Collective measures: Support and mutual aid groups for families. Conclusion of the page: The objective of the book is to raise awareness of the preventive measures that can be taken in daily life to avoid serious consequences such as intellectual disability in children. Prevention can greatly reduce the impacts of disability when it is well implemented. The next chapter will focus on the mechanisms that can damage the brain and the circumstances in which this damage occurs. Question is : Present a clear summary; • Justify the choice of text; • Address the two challenges; • Show the main ideas put forward; • Explain some strengths

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