EDUCATIONAL PROGRAMMING

Grouping Levels

The diagnosis of mental retardation is further specified with a code or grouping label that indicates the diagnosing clinician’s impression of the severity of the presenting retardation. This grouping label is linked to IQ (intelligence quotient).

Mild Mental Retardation;

Mild mental retardation affects 85% of the mentally retarded population. Their IQ score ranges form 50~75. Many individuals within this group can achieve academic success at about the sixth grade level. They cam become self-sufficient and in some cases, live independently with community and social support.

Moderate Mental Retardation;

Moderate mental retardation affects around 10% of the individuals under the classification of mental retardation. This group score between 35 and 55 on IQ tests and has adequate communication skills. Many of these individuals function very well in group homes and in the community. Many are employed and can take care of themselves with minimal supervision.

Severe Mental Retardation;

Severe mental retardation describes 3~4 % of the population with this classification. IQ scores rang form 20 ~ 40. Communication skills and self help skills are very basic and many individuals require supervision and assistance. Many of these individuals reside in group homes with assistance.

Profound Mental Retardation;

Profound mental retardation describes a very small portion of the mentally retarded population, about 1 ~ 2% of those affected. These individuals score under 25 on IQ tests and require around the clock care and support. There communication skills are limited and they require assistance for self care. People with profound mental retardation usually have neurological disorders as well.

WHAT IS ADAPTIVE BEHAVIOR?

Adaptive behavior is the collection of conceptual, social, and practical skills that people have learned so they can function in their everyday lives. Significant limitations in adaptive behavior impact a person’s daily life and affect the ability to respond to a particular situation or to the environment.

Limitations in adaptive behavior can be determined by using standardized tests that are named on the general population including people with disabilities and people without disabilities. On these standardized measures, significant limitations in adaptive behavior are operationally defined as performance that is at least 2 standard deviations below the mean of either

(a) one of the following three types of adaptive behavior conceptual, social or practical or

(b) an overall score on a standardized measure of conceptual, social, and practical skills.

Some specific examples of Adaptive Behavior Skills

Conceptual Skills

Receptive and expressive language

Reading and Writing

Money concepts

Self-directions

Social Skills

Interpersonal

Responsibility

Self-esteem

Gullibility (likelihood of being ticked or manipulated)

Naiveté          

Follows rules

Obey laws

Avoids victimization

Practical Skills

Personal activities of daily living such as eating, dressing, mobility and toileting.

Instrumental activities of daily living such as preparing meals, taking medication, using the telephone, managing money, using transportation and doing

Housekeeping activities.

Occupational skills.

Maintaining a safe environment.

WHAT ARE THE AUTISM SPECTRUM DISORDERS?

The autism spectrum disorders are more common in the pediatric population than are some better known disorders such as diabetes, spinal bifida, or Down syndrome. Prevalence studies have been done in several states and also in the Untied Kingdom, Europe and Asia. A recent study of a U.S. metropolitan area estimated that 3.4 of every 1,000 children 3-10 years old autism. These wide range of prevalence points to need for earlier and more accurate screening for the symptoms of ASD.

The earlier the disorder is diagnosed the sooner the child can be helped through treatment interventions, pediatricians, family physician, day-care providers, teachers, and parents may initially dismiss signs of ASD, optimistically thinking the child is just a little slow and will catch up. Although early intervention has a dramatic impact on reducing symptoms and increasing a child’s ability to grow and learn new skills, it is estimated that only 50 percent of children are diagnosed before kindergarten.

All children with ASD demonstrate deficits in 1) social interaction, 2) verbal and nonverbal communication, and 3) repetitive behaviors or interests. In addition, they will often have unusual responses to sensory experiences, such as certain sounds or the way objects look.

Each of these symptoms runs the gamut from mild to severe. They will present in each individual child differently. For instance, a child may have little trouble learning to read but exhibit extremely poor social interaction. Each child will display communication, social, and behavioral patterns that are individual but fit into the overall diagnosis of ASD.

Children with ASD do not follow the typical patterns of child development. In some children, hints of future problems may be apparent from birth. In most cases, the problems in communication and social skills become more noticeable as the child lags further behind other unusual behaviors become apparent. Some other children start off well enough. Oftentimes between 12 and 36 months old, the differences in the way they react to people and other unusual behaviors become apparent. Some parents report the change as being sudden, and their children start to rejects people, act strangely and lose language and social skills they had previously acquired. In other cases, there is a plateau, or leveling, of progress so that the difference between the child with autism and other children the same age becomes more noticeable.

ASD is defined by a certain set of behaviors that can range from the very mild to the severe. The following possible indicators of ASD were identified on the Public Health Training Network Web cast, Autism among US.

WHAT ARE SUPPORTS?

The concept of supports originated about 15 years ago and it has revolutionized the way habilitation and education services are provided to persons with mental retardation. Rather than mold individuals in to pre-existing diagnostic categories and force them into existing models of service, the supports approach evaluates the specific needs of the individual and then suggests strategies, services and supports that will optimize individual functioning. The supports approach also recognizes that individual needs and circumstances will change over time. Supports were an innovative aspect of the 1992 AAMR manual and they remain critical in the 2002 system. In 2002, they have been dramatically expanded and improved to reflect significant progress over the last decade.

Supports are defined as the resources and individual strategies necessary to promote the development, education, interests and personal well being of a person with mental retardation. Supports can be provided by a parent, friend, teacher, psychologist, doctor or by any appropriate person or agency.

Why are supports important?

Providing individualized supports can improve personal functioning, promote self-determination and societal inclusion, and improve personal well-being of a person with mental retardation. Focusing on supports as the way to improve education, employment, recreation and living environments is an important part of person-centered approaches to providing supports to people with mental retardation.

How do you determine what supports are needed?

AAMR recommends that an individual’s need for supports be analyzed in at least nine key areas such as human development, teaching and education, home living, community living, employment, health and safety, behavior, social and protection and advocacy.

What are some specific examples of supports areas and support activities?

Human Development Activities

• Providing physical development opportunities that include eye-hand coordination, fine motor skills and gross motor activities
• Providing cognitive development opportunities such as using words and images to represent the world and reasoning logically about concrete events
• Providing social and emotional developmental activities to foster trust, autonomy and initiative

Teaching and Education Activities

• Interacting with trainers and teachers and fellow trainee and students
• Participating in making decisions on training and educational activities
• Learning and using problem-solving strategies
• Using technology for learning
• Learning and using functional academics (reading signs, counting change, etc.)
• Learning and using self-determination skills

Home Living Activities

• Using the restroom/toilet
• Laundering and taking care of clothes
• Preparing and eating food
• Housekeeping and cleaning
• Dressing
• Bathing and taking care of personal hygiene and grooming needs
• Operating home appliances and technology
• Participating in leisure activities with the home

Community Living Activities

• Using transportation
• Participating in recreation and leisure activities
• Going to visit friends and family
• Shopping and purchasing goods
• Interacting with community members
• Using public buildings and settings

Employment Activities

• Learning and using specific job skills
• Interacting with co-workers
• Interacting with supervisors
• Completing work related tasks with speed and quality
• Changing job assignments
• Accessing and obtaining crisis intervention and assistance

Health and Safety Activities

• Accessing and obtaining therapy services
• Taking medication
• Avoiding health and safety hazards
• Communicating with health care providers
• Accessing emergency services
• Maintaining a nutritious diet
• Maintaining physical health
• Maintaining mental health/emotional well-being

Behavioral Activities

• Learning specific skills or behaviors
• Learning and making appropriate decisions
• Accessing and obtaining mental health treatments
• Accessing and obtaining substance abuse treatments
• Incorporating personal preferences into daily activities
• Maintaining socially appropriate behavior in public
• Controlling anger and aggression

Social Activities

• Socializing within the family
• Participating in recreation and leisure activities
• Making appropriate sexual decisions
• Socializing outside the family
• Making and keeping friends
• Communicating with others about personal needs
• Engaging in loving and intimate relationships
• Offering assistance and assisting others

Protection and Advocacy

• Advocating for self and others
• Managing money and personal finances
• Protecting self from exploitation
• Exercising legal rights and responsibilities
• Belonging to and participating in self-advocacy/support organizations
• Obtaining legal services

Treatment Options for Autism Spectrum Disorders

 There is no single best treatment package for all children with ASD. One point that most professional agree on is that early intervention is important; another is that most individuals with ASD respond well to highly structured, specialized programs.

Before you make decisions on your child’s treatment, you will want to gather information about the various options available. Learn as much as you can, look at all the options, and make your decision on your child’s treatment based on your child’s needs. You may want to visit public schools in your area to see the types of program they offer to special needs children.

Guidelines used by the Autism Society of America include the following questions parents can ask about the potential treatments:

• Will the treatment result in harm to my child?
• How will failure of the treatment affect my child and family?
• Has the treatment been validated scientifically?
• Are there assessment procedures specified?
• How will the treatment be integrated into my child’s current program? Do not become so infatuated with a given treatment that functional curriculum, vocational life, and social skills are ignored.

The National Institute of Mental Health suggests a list of questions parents can ask when planning for their child:

• How successful has the program been for other children?
• How many children have gone on to placement in a regular school and how have they performed?
• Do staff members have training and experience in working with children and adolescents with autism?
• How are activities planned and organized?
• Are the predictable daily schedules and routines?
• How much individual attention will my child receive?
• How is progress measured? Will my child’s behavior be closely observed and recorded?
• Will my child be given tasks and reward that are personally motivating?
• Is the environment designed to minimize distractions?
• Will the program prepare me to continue the therapy at home?
• What is cost, time commitment, and location of the program?

Among the many methods available for treatment and education of the people with autism, applied behavior analysis (ABA) has become widely accepted as an effective treatment. Mental hearth: A Report of the Surgeon General states, “Thirty years of research demonstrated the efficacy of applied behavioral and in increasing communication, learning, and appropriate social behavior and in increasing communication, learning, and appropriate social behavior. The basic research done by Ivar Lovaas and his colleagues at the University of California, Los Angeles, calling for an intensive, one-on-one child teacher interaction for 40 hours a week, laid a foundation for other educators and researchers in the search for further effective early interventions to help those with ASD attain their potential. The goal of behavioral management is to reinforce desirable behaviors and reduce undesirable ones.

An effective treatment program will build on the child’s interests, offer a predicable schedule, and teach as a series of simple steps, actively engage the child’s attention in highly structured activities, and provide regular reinforcement of behavior. Parental involvement has emerged as a major factor in treatment success. Parents work with teachers and therapists to identify the behaviors to be changed and the skills to be taught. Recognizing that parents are the child’s earliest teachers, more programs are beginning to train parents to continue the therapy at home.

As soon as a child’s disability has been identified, instruction should begin. Effective programs will teach early communication and social interaction skills. In children younger than 3 years, appropriate interventions usually take place in the home or a child care center. These interventions target specific deficits in learning, language, imitation, attention, motivation, compliances, and initiative of interaction. Included are behavioral methods, communication, occupational, and physical therapy along with social play interventions. Often the day will begin with a physical activity to help develop coordination and body awareness; children string beads, piece puzzles together, paint, and participate in other motor skill activities. At snack time the teacher encourages social interaction and models how to use language to ask for more juice. The children learn by doing. Working with children are students, behavioral therapists, and parents who have received extensive training. In teaching the children, positive reinforcement is used.

Children older than 3 years usually have school based, individualized, special education. The child may be in a segregated class with other autistic children or in an integrated class with children without disabilities for at least part of the day. Different localities may use differing methods but all should provide a structure that will help the children learn social skills and functional communication. In these programs, teachers often involve the parents, giving useful advice in how to help their child use the skills or behaviors learned at school when they are at home.

In elementary school, the child should receive help in any skill area that is delayed and, at the same time, be encouraged to grow in his or her areas of strength. Ideally, the curriculum should be adapted to the individual child’s needs. Many schools today have an inclusion program in which the child is in a regular classroom for most of the day, with special instruction for a part of the day. This instruction should include such skills as learning how to act in social situations and in making friends. Although higher functioning children may be able to handle academic work, they too need help to organize tasks and avoid distractions.

During middle and high school years, instruction will begin to address such practical matters as work, community living and recreational activities. This should include work experience, using public transportation, and learning skills that will be important in community living.

All through your child school’s years you will want to be an active participant in his or her education program. Collaboration between parents and educators is essential in evaluating your child’s progress.

THE DIAGNOSIS OF AUTISM SPECTRUM DISORDERS

Although there are many concerns about labeling a young child with an ASD, the earlier the diagnosis of ASD is made, the earlier needed interventions can begin. Evidence over the last 15 years indicates that intensive early intervention in optimal educational setting for at least 2 years the preschool years result in improved outcomes in most young children with ASD.

In evaluating a child, clinicians rely on behavioral characteristics to make a diagnosis. Some of the characteristics behaviors of ASD may be apparent in the first few months of child’s life, or they may appear at any time during the early years. For the diagnosis, problems in at least of the areas of communication, socialization, or restricted behavior must be present before the age of 3. The diagnosis requires a two-stage process. The first stage involves developmental screening during “well child” check-ups; the second stage entails a comprehensive evaluation by a multidisciplinary team.

Screening

A well child check up should include a developmental screening test. If your child’s pediatrician does not routinely check your child with such a test, ask that it be done. Your own observations and concerns about your child’s development will be essential in helping to screen your child. Reviewing family videotapes, photos, and baby albums can help parents remember when each behavior was first noticed and when the child reached certain developmental milestones.

Some screening instruments have been developed to quickly gather information about a child’s social and communicative development within medical settings. Among them are the checklist of Autism in Toddlers (CHAT), the modified checklist for autism in Toddlers (M-CHAT), the screening tool for Autism in Two-Years-Olds (STAT), and the Social Communication Questionnaire (SCQ) (for children 4 years of age and older).

Some screening instruments rarely solely on parent responses to questionnaire, and some rely on a combination of parent report and observation. Key items on these instruments that appear to differentiate children with autism from other groups before the age of 2 include pointing and pretend play. Screening instruments do not provide individual diagnosis but serve to assess the need for referral for possible diagnosis of ASD. These screening methods may not identify children with mild ASD, such as those with high-functioning autism or Asperger syndrome.

During the last few years, screening instruments have been devised to screen for Asperger syndrome and higher functioning autism. The Autism spectrum screening questionnaire (ASSQ), the Australian scale for Asperger syndrome, and most recent, the childhood Asperger syndrome test (CAST), are the some of the instruments that are reliable for identification of school age children with Asperger syndrome or higher functioning autism. These tools concentrate on social and behavioral impairments in children without significant language delay.

If, following the screening process or during a routine “well child” check up, your child’s doctor sees any of the possible indicators of ASD, further evaluation is indicated.

Comprehensive Diagnostic Evaluation

The second stage of diagnosis must be comprehensive in order to accurately rule in or rule an ASD or other developmental problem. This evaluation may be done by a multidisciplinary team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals who diagnosis children with ASD.

Because ASDs are complex disorders and may involve other neurological or genetic problems, a comprehensive evaluation should entail neuralgic and genetic assessment, along with in depth cognitive and language testing. In addition, measures developed specifically for diagnosing autism are often used. These include the Autism Diagnosing autism are often used. These include the Autism Diagnosis Interview-Revised (ADI-R) and the Autism Diagnostic Observation Schedule (ADOS-G). The ADI-R is a structured interview that contains over 1000 items and is conducted with a caregiver. It consists of four main factors—the child’s communication, social interaction, repetitive behaviors, and age of onset symptoms. The ADOS-G is an observational measure used to “press” for socio-communicative behaviors that are often delayed, abnormal, or absent in children with ASD.

Still another instrument often used by professionals is the childhood autism. Rating Scale (CARS). It aids in evaluating the child’s body movements, adaptation to change, listening response, verbal communication, and relationship to people. It is suitable for use with children over 2 years of age the examination observes the child also obtains relevant information from the parents. The child’s behavior is rated on a scale based on deviation form the typical behavior of children of the same age.

Two other tests should be used to assess any child with a developmental delay are a formal audio-logic hearing evaluation and a lead screening. Although some hearing loss can co-occur with ASD, some children with ASD may be incorrectly thought to have such a loss. In addition, if the child has suffered from an ear infection, transient hearing loss can occur. Lead screening is essential for children who remain for a long period of time in the oral monitor stage in which they put any everything into their mouths. Children with an autistic disorder usually have elevated blood lead levels.

Customarily, an expert diagnostic team has responsibility of thoroughly evaluating the child, assessing the child’s unique strengths and weakness, and determining a formal diagnosis. The team will then meet wit parents to explain the results of the evaluation.

Although parents may have been aware that something was not “quite right” with their child, when the diagnosis is given, it is devastating blow. At such a time. It is hard to stay focused on asking questions. But while members of the evaluation team are together is the best opportunity the parents will have to take for their child. Learning as much as possible at this meeting is very important, but it is helpful to leave this meeting with the name or names of professionals who can be contacted if the parents have further questions.

RARE AUTISM SPECTRUM DISORDERS

Rett syndrome is relatively rare, affecting almost exclusively females, one out of 10,000 to 15,000. After a period of normal development, sometime between 6 and 18 months, autism-like symptoms begin to appear. The little girl’s mental and social development regresses—she no longer responds to her parents and pulls away from any social contact. If she has been talking, she stops: she cannot control her feet: she wrings her hands. Some of the problems associated with Rett syndrome can be treated. Physical, occupational and speech therapy can help with problems of coordination, movement and speech.

Scientists sponsored by the national institute of child health and human development have discovered that a mutation in the sequence of a single gene can cause Rett syndrome. This discovery may help doctors slow or stop the progress of the syndrome. It may also lead to methods of screening for Rett syndrome, thus enabling doctors to start treating these children much sooner, and improving the quality of life these children experience.

What are the autism spectrum disorders?

The autism spectrum disorders are more common in the pediatric population than are some better known disorders such as diabetes, spinal befida, or Down syndrome. Prevalence studies have been done in several states and also in the Untied Kingdom, Europe and Asia. A recent study of a U.S. metropolitan area estimated that 3.4 of every 1,000 children 3-10 years old autism. This wide range of prevalence points to need for earlier and more accurate screening for the symptoms of ASD.

The earlier the disorder is diagnosed the sooner the child can be helped through treatment interventions, pediatricians, family physician, day-care providers, teachers, and parents may initially dismiss signs of ASD, optimistically thinking the child is just a little slow and will catch up. Although early intervention has a dramatic impact on reducing symptoms and increasing a child’s ability to grow and learn new skills, it is estimated that only 50 percent of children are diagnosed before kindergarten.

All children with ASD demonstrate deficits in 1) social interaction, 2) verbal and nonverbal communication, and 3) repetitive behaviors or interests. In addition, they will often have unusual responses to sensory experiences, such as certain sounds or the way objects look.

Each of these symptoms runs the gamut from mild to severe. They will present in each individual child differently. For instance, a child may have little trouble learning to read but exhibit extremely poor social interaction. Each child will display communication, social, and behavioral patterns that are individual but fit into the overall diagnosis of ASD.

Children with ASD do not follow the typical patterns of child development. In some children, hints of future problems may be apparent from birth. In most cases, the problems in communication and social skills become more noticeable as the child lags further behind other unusual behaviors become apparent. Some other children start off well enough. Oftentimes between 12 and 36 months old, the differences in the way they react to people and other unusual behaviors become apparent. Some parents report the change as being sudden, and their children start to rejects people, act strangely and lose language and social skills they had previously acquired. In other cases, there is a plateau, or leveling, of progress so that the difference between the child with autism and other children the same age becomes more noticeable.

ASD is defined by a certain set of behaviors that can range from the very mild to the severe. The following possible indicators of ASD were identified on the Public Health Training Network Web cast, Autism among US.

MICRO-CEPHALY

What is microcephaly?

Microcephaly is a condition that is present at birth in which the baby’s head is much smaller than normal for an infant of that age and gender. “Micro” means small and cephaly refers to head. Most children with microcephaly also have a small brain and mental retardation. However, some children with small heads have normal intelligence.

What causes microcephaly?

Microcephaly is either caused by exposure to harmful substance during the fetal development, or it may be associated with genetic problems or syndromes that may have a tendency to run in families.

Theories suggest that the following ay predispose a fetus to problems that affect the normal development of the head during pregnancy:

• Exposure to hazardous chemicals/substance
• Exposure to retardation
• Lack of proper vitamins and nutrients in the diet
• Infection
• Prescription or illegal drug and alcohol consumption
• Maternal diabetes

Microcephaly can occur alone or in association with other health problems, and may occur from inheritance of an auto-somal recessive, or rarely, an auto-somal dominant gene. Acquired microcephaly may occur after birth due to various brains injuries such as lack of oxygen or infection.

Auto-somal recessive and auto-somal dominant are to patterns in which genes are inherited in a family. Genes determine out traits, such as eye color and blood type, and can also cause disease. Auto-somal means that both males and females are equally affected. Recessive means that two copies of the gene, one inherited from each parent, are necessary to have the condition (in this case, microcephaly). After parents have had one child with auto-somal recessive microcephaly, there is a 25 percent chance, or one in

four chances, with each pregnancy, to have another child with microcephaly.

What are symptoms of Microcephaly?

The following are the most common symptoms of microcephaly. However, each child may experience symptoms differently. Symptoms may include:

• Appearance of the baby’s head is very small
• High-pitched cry
• Poor feeding
• Seizures
• Increased movement of the arms and legs (spasticity)
• Developmental delays
• Mental retardation

The symptoms of microcephaly may resemble other conditions or medical problems. Always consult your child’s physician for a diagnosis.

How is microcephaly diagnosed?

Microcephaly may be diagnosed before the birth by prenatal ultrasound, a diagnostic imaging technique which uses the high frequency sound waves and a computer to create images of blood vessels, tissues, and organs. Ultrasounds are used to view the internal organs as they function, and to assess the blood flow through various vessels.

In many cases, microcephaly may not be evident by ultrasound until the third trimester, and therefore may not be seen on ultrasound preformed earlier in pregnancy. The diagnosis of microcephaly may be made at birth or later in the infancy. The baby’s head circumference is much smaller than normal. During the physical examination, the physician obtains a complete prenatal and birth history of the child. In older babies and children, the physician may also risk if there are a family history of the microcephaly or others medical problems. The physician will also ask about developmental milestones since microcephaly can be associated with other problems, such as mental retardation. Developmental delays may require further medical follow up for underlying problems.

A measurement of the circumference of the child’s head is taken and compared to a scale that can identify normal and abnormal ranges.

Diagnostic tests that may be performed to confirm the diagnosis of microcephaly and identify abnormalities in the brain include:

• Head circumference – this measurement is compared with a scale for normal growth and size
• X-ray – a diagnostic test which uses invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film.
• Computed tomography scan (also called a CT or a CAT scan). – A diagnostic imaging procedure that uses a combination of x-rays and computer technology to produce cross-sectional images (often called slices), both horizontally and vertically, of the body. A CT scan shows detailed images of any part of the body, including bones, muscles, fat and organs. CT scan are more detailed than the x-rays.
• Magnetic resonance imaging (MRI) – a diagnostic procedure that uses a combination of large magnets, radiofrequencies, and a computer to produce detailed images of organs and structures within the body.
• Blood tests
• Urine tests

Life-long considerations for a child with microcephaly:

There is no treatment for microcephaly that will return the baby’s head to a normal size or shape. Since microcephaly is a life-long condition that is not correctable, management includes focusing on preventing or minimizing deformities and maximizing the child’s capabilities at home and in the community. Positive reinforcement will encourage the child to strengthen his/her self-esteem and promote as much independence as possible.

The full extent of the problem is usually not completely understood immediately after birth, but may be revealed as the child grows and develops.

Children born with microcephaly require frequent examination and diagnostic testing by their physician to monitor the development of the head as the child grows. The medical team work hard with the child’s family to provide education and guidance to improve the health and well being of the child.

Genetic counseling may be recommended by the physician to provide information on the recurrence risks for the disorder and any available testing.

Mental Retardation in America: A Historical Reader_III

(Part-III)

A problem in reading the various chapters of this book, which is also true of working with mental retardation in the real world, is the wide range of persons who are classified as mentally retarded. This is illustrated at one extreme by the vignettes of formerly institutionalized young men inducted into the armed services during World War II, who, in many instances, served effectively. In that time of great social need, it was these soldiers’ abilities, not their disabilities that counted. At the other extreme, in my work I encounter youngsters whose mental retardation is insignificant as compared with their severe disorders of behaviors. Finally, it is the behavioral disorder and not intellectual retardation that is decisive and destructive to family life. This suggests a fundamental flaw in the concept of mental retardation: “mental” life constitutes not only intellectual ability (as measured by IQ tests), but also attributes that are emotional and moral (for lack of a better word) as well. The overvaluation of IQ seems to be leading to decisions regarding capital punishment. The underestimation of emotional and behavioral dyscontrol and the systematic abolition of residential placement for children still give rise to situations as burdensome and cruel for families as any described in this book.

Mental Retardation in America tells a story with a broad sweep—how a society has dealt with mental retardation through profound social and scientific changes. At this end, we are in many respects back where we started, with retarded children cared for within their families. The plot is powerful, the questions profound, and the answers that have been given over the years show the usual flaws and faults of most human endeavors.

Mental Retardation in America: A Historical Reader_II

(Part-II)

The second equally influential study was The Kalliakak Family; A Study in the Heredity of Feeble Mindedness by Henry Goddard, 1912. Inspired by the new Mendelism, the study traced back six generations of the family of a young institutionalized woman and found an appalling amount of defectiveness. Yet there was also information about “a good family of the same name.” it emerged, of course, that the forebear met “a feeble-minded girl by whom he became the father of a feeble-minded son.”  Subsequently the father “married a respectable girl of good family, “by whom he produced children with “a marked tendency toward professional careers,” who had “married into the best families. . . . Signers of the declaration of independence ….etc.” Goddard invented the pseudonym kallikak by combining a Greek root meaning “beauty” (kallos) with one meaning “bad” (kakos). The lesson was clear and dramatic: the study linked medical and moral deviance and fused the new Mendelian laws with the old biblical injunction that “the sins of the fathers shall be visited on the sons”

These ideas fueled the eugenics movement and the campaign for sterilization of the mentally retarded, which, according to the editors, was “the nadir of the American experience with mental retardation.” The Supreme Court upheld eugenic sterilization in 1927, with Oliver Wendell Holmes’s pronouncement that “three generations of imbeciles is enough.” After World War II and the revelation of Nazi experience with eugenics, support for sterilization faded. The sterilization issue inspired writers—especially Steinbeck and Faulkner—to explore the lives of mentally, retarded characters in works that are sensitively reviewed in this book.

After World War II, and with the ensuing general prosperity, the activism of parents on the behalf of their physically and mentally handicapped children arose; such activism was inspired by a new belief in human rights after the Nazi atrocities and by the “intense middle-class familialism” of the postwar years. This attitude led to a desire that retarded children be a part of their families and receive the same degree of care and concern—and ultimately the same services, including education—as “normal children.” Deinstitutionalization followed, and in 1975 Congress enacted a guarantee of free public education to children with disabilities by passing the Education for All handicapped Children Act. The special role of President John F. Kennedy, his sister Eunice Kennedy Shriver, and the rest of the Kennedy family in supporting services—including the Special Olympics, an important example of the “ideology of normalization”—and advocating for the mentally retarded persons should be noted. Further steps were taken to bring persons with mental retardation under the equal protection of the laws as American citizens; these measures included the ruling that people should be served in the least restrictive environment and the decisions that established the community as the site of services for people with mental retardation and disallowed that condition as the sole justification for institutionalization. 

Mental Retardation in America: A Historical Reader_I

(Part-I)

This is highly readable and well-edited historical anthology, a wide-ranging collection that deals with mental retardation over two centuries. The focus is on the views and actions of society. The book deserves perusal by anyone interested in mental retardation.

            The editor consider the history of retardation in the context of general history of the recognition of “Mongolism” by John Landon Down, the racial detour that accompanied that recognition, and eventual delineation of trisomy 21 as the cause; the other is a treatise on the pathology of mental retardation by Dr. William Fish, of the Albany Medical College, which he wrote in 1879. The treatise is welcome fare for a physician reader. Discussed are consanguine marriages, abnormalities of the “minute structure of the brain,” microcephaly, epilepsy, and cretinism in Switzerland (…the precise element or elements producing it have not as yet been determined”), hydrocephaly, trauma and paralysis. Equally clear is Dr. Fish’s prescription, “The necessity for training schools and asylums for the reception of the idiotic and imbecile is now unquestioned….[Its is] the duty of society to provide for these feeble ones… An idiot child in the family of a laboring man is a burden weighing heavily upon him and may indirectly by the means of rendering the whole family dependent on the state for support.”

This rather straightforward approach contrasts with the complexity of the history of mental retardation in American society, which is reflective of the larger course of events in American society. The full sweep of that history is outlined from retarded persons functioning as integral parts of their families in the Colonial and early rural United Stats to the almshouses of the late 18^th and early 19^th centuries, where the poor, infirm, insane and idiotic were conflated in conditions of indescribable depravity. Later came the specialization of institution for epileptics and the retarded. The pressures of urbanization and industrialization the needs of immigrant families and the application of scientific concepts to the definition of retardation, e.g., the advent of intelligence tests and the familiar categorization of the retarded as idiots, imbeciles and morons) led to the heyday of institutionalization. Between 1870 and 1880, there was a fivefold increase in the number of feeble-minded people.

Social forces and scientific interest led to intense focus on and very convoluted thinking about the retarded. The 19^th century view of degeneracy (roughly synonymous with bad heredity) led theorists to conceive of social problems such as insanity, poverty, intemperance and criminality as well as idiocy as interchangeable. This view was expounded in “The Jukes” A Study Crime, pauperism Disease and heredity by Richard Dugdale, 1875, a study of a rural clan that over seven generations produced 1200 bastards, beggars, murderers, prostitutes, thieves and syphilitics.