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Specific developmental disorder
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|Specific developmental disorder |
|Classification & external resources |
|ICD-10 |F80.-F83. |
|ICD-9 |307, 315 |
Specific developmental disorders categorizes specific learning disabilities and developmental disorders affecting coordination.
|Contents |
|[hide] |
|1 ICD-10 taxonomy |
|1.1 Specific developmental disorders of speech and language |
|1.2 Specific developmental disorders of scholastic skills (SDDSS) |
|1.3 Specific developmental disorder of motor function |
|1.4 Mixed specific developmental disorder |
|2 DSM-IV-TR taxonomy |
|2.1 Learning Disorders |
|2.2 Motor Skills Disorders |
|2.3 Communication Disorders |
|3 External links |
|4 See also |
[pic][edit] ICD-10 taxonomy
The tenth revision of the International Statistical Classification of Diseases and Related Health Problems (ICD-10) has four categories of specific developmental disorder: specific developmental disorders of speech and language, specific developmental disorders of scholastic skills, specific developmental disorder of motor function, and mixed specific developmental disorder.
[edit] Specific developmental disorders of speech and language
▪ Specific speech articulation disorder (F80.0)
▪ Expressive language disorder (F80.1)
▪ Receptive language disorder (F80.2)
▪ Acquired aphasia with epilepsy Landau-Kleffner syndrome (F80.3)
▪ Other developmental disorders of speech and language (F80.8)
▪ Lisping
▪ Developmental disorder of speech and language, unspecified (F80.9)
[edit] Specific developmental disorders of scholastic skills (SDDSS)
▪ Specific reading disorder (F81.0)
▪ Specific spelling disorder (F81.1)
▪ Specific disorder of arithmetical skills (F81.2)
▪ Mixed disorder of scholastic skills (F81.3)
▪ Other disorders of scholastic skills (F81.8)
▪ Developmental disorder of scholastic skills, unspecified (F81.9)
[edit] Specific developmental disorder of motor function
▪ Specific developmental disorder of motor function (F82)
[edit] Mixed specific developmental disorder
▪ Mixed specific developmental disorder (F83)
[edit] DSM-IV-TR taxonomy
The text revision of the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) categorizes specific developmental disorders as communication disorders, learning disorders, and motor skills disorders. They are all "Disorders Usually First Diagnosed in Infancy, Childhood, or Adolescence," which also includes pervasive developmental disorders (i.e., the autistic spectrum), attention-deficit and disruptive behavior disorders, feeding and eating disorders, tic disorders, elimination disorders, and other disorders like selective mutism, separation anxiety disorder, and reactive attachment disorder.
[edit] Learning Disorders
▪ Mathematics Disorder (315.1)
▪ Reading Disorder (315.0)
▪ Disorder of Written Expression (315.2)
▪ Learning Disorder Not Otherwise Specified (315.9)
[edit] Motor Skills Disorders
▪ Developmental Coordination Disorder (315.4)
[edit] Communication Disorders
▪ Expressive Language Disorder (315.31)
▪ Phonological Disorder(315.39)
▪ Mixed Receptive-Expressive Language Disorder (315.32)
▪ Stuttering (307.0)
▪ Communication Disorder Not Otherwise Specified (307.9)
Abstract:
Journal of Child Psychology and Psychiatry
Volume 38 Issue 3 Page 351-363, March 1997
To cite this article: Jan Rispens, Tom A. van Yperen (1997)
How Specific Are "Specific Developmental Disorders"? The Relevance of the Concept of Specific Developmental Disorders for the Classification of Childhood Developmental Disorders
Journal of Child Psychology and Psychiatry 38 (3), 351–363.
doi:10.1111/j.1469-7610.1997.tb01519.x
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[pic]Abstract
How Specific Are "Specific Developmental Disorders"? The Relevance of the Concept of Specific Developmental Disorders for the Classification of Childhood Developmental Disorders
• Jan Rispens11Utrecht University, The Netherlands
• Tom A. van Yperen22The Netherlands Institute of Care and Welfare. Utrecht, The Netherlands
• 1Utrecht University, The Netherlands2The Netherlands Institute of Care and Welfare. Utrecht, The Netherlands
Requests for reprints to: Dr. Jan Rispens. Utrecht University. Department of Education. PO 8O. 140. 3508 TC Utrecht The Netherlands.
: GAP: Group for the Advancement of Psychiatry, MAS: Multi-axial Scheme, SDD: specific developmental disorder.
Abstract
The concept of "specific developmental disorder" (SDD) refers to delays in developmental domains such as language and speech development, motor coordination or the development of scholastic skills, in the absence of sensory deficits, subnormal intelligence or poor educational conditions. The key element in this concept is the notion of a discrepancy between observed and expected level of development In DSM III- R and ICD 10. SDD serves as a conceptual umbrella, suggesting that the subsumed disorders are of the same type. In DSM-IV. the SDD umbrella is not used explicitly, but the notion of a discrepaney is present in the categories of Learning Disorders. Motor Skill Disorder and Communication Disorders, suggesting a close relationship between these disorders. One of the advantages of the use of SDD as a unifying concept is that ii contributes to the. standardisation of the description off the various disorders. However, bused on reviews of research regarding the reliability and validity of the SDD categories, we argue that the application of n unifying SDD concept has been premature. For each of the categories for disorders in scholastic skills, language, speech and motor coordination the notion of a discrepancy between observed find expected level of development should be elaborated and tested more thoroughly, before SDD can be used as a unifying concept in classification.
What is conduct disorder?
Children with conduct disorder repeatedly violate the personal or property rights of others and the basic expectations of society. A diagnosis of conduct disorder is likely when symptoms continue for 6 months or longer. Conduct disorder is known as a "disruptive behavior disorder" because of its impact on children and their families, neighbors, and schools.
Another disruptive behavior disorder, called oppositional defiant disorder, may be a precursor of conduct disorder. A child is diagnosed with oppositional defiant disorder when he or she shows signs of being hostile and defiant for at least 6 months. Oppositional defiant disorder may start as early as the preschool years, while conduct disorder generally appears when children are older. Oppositional defiant disorder and conduct disorder are not co-occurring conditions.
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What are the signs of conduct disorder?
Symptoms of conduct disorder include:
• Aggressive behavior that harms or threatens other people or animals;
• Destructive behavior that damages or destroys property;
• Lying or theft;
• Truancy or other serious violations of rules;
• Early tobacco, alcohol, and substance use and abuse; and
• Precocious sexual activity.
Children with conduct disorder or oppositional defiant disorder also may experience:
• Higher rates of depression, suicidal thoughts, suicide attempts, and suicide;
• Academic difficulties;
• Poor relationships with peers or adults;
• Sexually transmitted diseases;
• Difficulty staying in adoptive, foster, or group homes; and
• Higher rates of injuries, school expulsions, and problems with the law.
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How common is conduct disorder?
Conduct disorder affects 1 to 4 percent of 9- to 17-year-olds, depending on exactly how the disorder is defined (U.S. Department of Health and Human Services, 1999). The disorder appears to be more common in boys than in girls and more common in cities than in rural areas.
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Who is at risk for conduct disorder?
Research shows that some cases of conduct disorder begin in early childhood, often by the preschool years. In fact, some infants who are especially "fussy" appear to be at risk for developing conduct disorder. Other factors that may make a child more likely to develop conduct disorder include:
• Early maternal rejection;
• Separation from parents, without an adequate alternative caregiver;
• Early institutionalization;
• Family neglect;
• Abuse or violence;
• Parental mental illness;
• Parental marital discord;
• Large family size;
• Crowding; and
• Poverty.
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What help is available for families?
Although conduct disorder is one of the most difficult behavior disorders to treat, young people often benefit from a range of services that include:
• Training for parents on how to handle child or adolescent behavior.
• Family therapy.
• Training in problem solving skills for children or adolescents.
• Community-based services that focus on the young person within the context of family and community influences.
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What can parents do?
Some child and adolescent behaviors are hard to change after they have become ingrained. Therefore, the earlier the conduct disorder is identified and treated, the better the chance for success. Most children or adolescents with conduct disorder are probably reacting to events and situations in their lives. Some recent studies have focused on promising ways to prevent conduct disorder among at-risk children and adolescents. In addition, more research is needed to determine if biology is a factor in conduct disorder.
Parents or other caregivers who notice signs of conduct disorder or oppositional defiant disorder in a child or adolescent should:
• Pay careful attention to the signs, try to understand the underlying reasons, and then try to improve the situation.
• If necessary, talk with a mental health or social services professional, such as a teacher, counselor, psychiatrist, or psychologist specializing in childhood and adolescent disorders.
• Get accurate information from libraries, hotlines, or other sources.
• Talk to other families in their communities.
• Find family network organizations.
People who are not satisfied with the mental health services they receive should discuss their concerns with their provider, ask for more information, and/or seek help from other sources.
This is one of many fact sheets in a series on children's mental health disorders. All the fact sheets listed below are written in an easy-to-read style. Families, caretakers, and media professionals may find them helpful when researching particular mental health disorders. To obtain free copies, call 1-800-789-2647 or visit .
Conduct disorder is the most serious psychiatric disorder in childhood and adolescence.
Conduct disorder is a more severe form of
oppositional defiant disorder (ODD)
and the childhood equivalent of
antisocial personality disorder.
[pic]
Conduct disorder is a complicated group of behavioral and emotional problems in children and adolescents.
Those with this disorder have great difficulty following rules and behaving in a socially acceptable way. They are often viewed by other children, adults and social agencies as "bad" or delinquent, rather than mentally ill.
Children or adolescents with conduct disorder may exhibit aggression to people and animals, destruction of property, deceitful, lying, stealing, and serious violation of rules.
| |
| |
|Aggression to people and animals |
|bullies, threatens or intimidates others |
|often initiates physical fights |
|has used a weapon that could cause serious physical harm to others (e.g. a bat, brick, broken |
|bottle, knife or gun) |
|is physically cruel to people and/or animals |
|steals from a victim while confronting them (e.g. assault) |
|forces someone into sexual activity |
| |
|Destruction of Property |
|deliberately engages in firesetting with the intention to cause damage |
|deliberately destroys other's property |
| |
|Deceitfulness, lying, or stealing |
|has broken into someone else's building, house, or car |
|lies to obtain goods, or favors or to avoid obligations |
|steals items without confronting a victim (e.g. shoplifting, but without breaking and entering) |
| |
|Serious violations of rules |
|often stays out at night despite parental objections |
|runs away from home |
|often truant from school |
| |
Children with conduct disorder may also experience:
• Higher rates of depression, suicidal thoughts, suicide attempts, and suicide
• Academic difficulties
• Poor relationships with peers or adults
• Sexually transmitted diseases
• Difficulty staying in adoptive, foster, or group homes
• Higher rates of injuries, school expulsions, and problems with the law
Children who exhibit these behaviors should receive a comprehensive evaluation. Many children with a conduct disorder may have coexisting conditions such as mood disorders, anxiety, post-traumatic stress disorder (PTSD), substance abuse, ADHD, learning problems, or thought disorders which can also be treated.
Research shows that youngsters with conduct disorder are likely to have ongoing problems if they and their families do not receive early and comprehensive treatment. Without treatment, many young people with conduct disorder are unable to adapt to the demands of adulthood and continue to have problems with relationships and holding a job. They often break laws or behave in an antisocial manner.
Many factors may contribute to a child developing conduct disorder, including brain damage, child abuse, genetic vulnerability, school failure, and traumatic life experiences. Other factors that may make a child more likely to develop conduct disorder include early maternal rejection and/or separation from parents, parental mental illness, and family violence.
Treatment of children with conduct disorder can be complex and challenging. Treatment can be provided in a variety of different settings depending on the severity of the behaviors.
Adding to the challenge of treatment are the child's uncooperative attitude, fear and distrust of adults. In developing a comprehensive treatment plan, a child and adolescent mental health professional may use information from the child, family, teachers, and other medical specialties to understand the causes of the disorder.
Behavior therapy and psychotherapy are usually necessary to help the child appropriately express and control anger. Special education may be needed for youth with learning disabilities. Parents often need expert assistance in devising and carrying out special management and educational programs in the home and at school.
Treatment is rarely brief since establishing new attitudes and behavior patterns takes time. Some child and teen behaviors are hard to change after they have become ingrained. Therefore, the earlier the conduct disorder is identified and treated, the better the chance for success. Early treatment offers a child a better chance for considerable improvement and hope for a more successful future.
What are Pervasive Developmental Disorders?
Is there any treatment?
What is the prognosis?
What research is being done?
Organizations
Publicaciones en Español
What are Pervasive Developmental Disorders?
The diagnostic category of pervasive developmental disorders (PDD) refers to a group of disorders characterized by delays in the development of socialization and communication skills. Parents may note symptoms as early as infancy, although the typical age of onset is before 3 years of age. Symptoms may include problems with using and understanding language; difficulty relating to people, objects, and events; unusual play with toys and other objects; difficulty with changes in routine or familiar surroundings, and repetitive body movements or behavior patterns. Autism (a developmental brain disorder characterized by impaired social interaction and communication skills, and a limited range of activities and interests) is the most characteristic and best studied PDD. Other types of PDD include Asperger's Syndrome, Childhood Disintegrative Disorder, and Rett's Syndrome. Children with PDD vary widely in abilities, intelligence, and behaviors. Some children do not speak at all, others speak in limited phrases or conversations, and some have relatively normal language development. Repetitive play skills and limited social skills are generally evident. Unusual responses to sensory information, such as loud noises and lights, are also common.
Is there any treatment?
There is no known cure for PDD. Medications are used to address specific behavioral problems; therapy for children with PDD should be specialized according to need. Some children with PDD benefit from specialized classrooms in which the class size is small and instruction is given on a one-to-one basis. Others function well in standard special education classes or regular classes with additional support.
What is the prognosis?
Early intervention including appropriate and specialized educational programs and support services plays a critical role in improving the outcome of individuals with PDD. PDD is not fatal and does not affect normal life expectancy.
What research is being done?
The NINDS conducts and supports research on developmental disabilities, including PDD. Much of this research focuses on understanding the neurological basis of PDD and on developing techniques to diagnose, treat, prevent, and ultimately cure this and similar disorders.
Mortality Statistics > Statistics > Mixed specific developmental disorders (Latest available) by country
|VIEW DATA: |Definition Source [pic] Printable version |
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|#1 |Israel: |6 deaths | |
|#2 |Venezuela: |2 deaths | |
|#3 |Brazil: |2 deaths | |
|#4 |Germany: |1 deaths | |
|#5 |Mexico: |1 deaths | |
| |Total: |12 deaths | |
| |Weighted average: |2.4 deaths | |
DEFINITION: Total for all ages and sexes. Database compiled January 2004. Total of figures for:
• Mixed specific developmental disorders
The mortality statistics consist of deaths registered in national vital registration systems, as submitted to the World Health Organisation. Underlying cause of death is listed as coded by the relevant national authority. Death registration coverage and cross-national differences in coding practices, particularly in the use of codes for ill-defined and unknown causes, must be taken into account to validly compare mortality rates for specific causes across countries. Great caution should therefore be taken when doing inter-country comparisons. The "mortality" statistics listed here are therefore best thought of as an indication of the data being recorded by various nations, rather than as an accurate indicator of real causes of death.
SOURCE: World Health Organisation Statistical Information System
Mental Health and Growing Up, Third Edition
ADHD and hyperkinetic disorder
Factsheet 5: Attention-deficit hyperactivity disorder and hyperkinetic disorder: for parents and teachers
▪ Arabic version
▪ Click here to download PDF version of this leaflet [pic]
▪ Viewing PDF documents with Adobe Acrobat
[pic]
About this factsheet
This is one in a series of factsheets for parents, teachers and young people entitled Mental Health and Growing Up. The aims of these factsheets are to provide practical, up-to-date information about mental health problems (emotional, behavioural and psychiatric disorders) that can affect children and young people. This factsheet looks at attention-deficit hyperactivity disorder (ADHD) and hyperkinetic disorder, the signs to look for and where to get help.
Introduction
What are attention-deficit hyperactivity disorder and hyperkinetic disorder?
Many children, especially under-fives, are inattentive and restless. This does not necessarily mean they are suffering from ADHD or hyperkinetic disorder (see Factsheet 1 on the restless and excitable child).
The terms `attention deficit', `attention-deficit hyperactivity disorder', `hyperkinetic disorder' and `hyperactivity' are used by professionals to describe the problems of children who are overactive and have difficulty concentrating.
The terms attention deficit disorder (ADD) or attention-deficit hyperactivity disorder (ADHD) are used in the USA. The official term in the UK is hyperkinetic disorder. These differences in terminology can sometimes cause confusion. In both instances, these children usually have problems with attention control and overactivity.
What are the signs?
Children with ADHD/hyperkinetic disorder:
▪ are restless, fidgety and overactive
▪ continuously chatter and interrupt people
▪ are easily distracted and do not finish things
▪ are inattentive and cannot concentrate on tasks
▪ are impulsive, suddenly doing things without thinking first
▪ have difficulty waiting their turn in games, in conversation or in a queue.
This type of behaviour is common in most children. It becomes a problem when these characteristics are exaggerated, compared to other children of the same age, and when the behaviour affects the child's social and school life. Often the signs will have been obvious since the child was a toddler.
What causes ADHD/hyperkinetic disorder?
We do not know exactly what causes these disorders, but genetic factors seem to play a part. The disorders can run in families, with boys more often affected than girls.
Where can I get help?
There is no simple test for ADHD/hyperkinetic disorder. Making a full diagnosis requires an experienced specialist assessment, usually done by a child psychiatrist or specialist paediatrician. The diagnosis is made by recognising patterns of behaviour, observing the child and obtaining reports of their behaviour at home and at school.
Your general practitioner will be able to offer you advice and support and will usually refer you to a specialist. A child and adolescent psychiatrist will undertake a thorough assessment and offer treatment. Some clinical psychologists and paediatricians also have special experience and skills in managing this problem.
Effective treatment will include advice and support for the parents.
A full specialist assessment
This will enable your child's needs to be clearly identified.
Psychological management
You should expect:
▪ a full explanation of the condition to you and your child;
▪ advice about on how to manage difficult behaviour;
▪ communication between the child's specialist and teachers, who will offer you advice on structured activities and reward systems for positive behaviour that may help. Special support and teaching may also be needed;
▪ help for difficulties that have developed as a result of ADHD/hyperkinetic disorder, including low self-esteem, difficulty with friendships, temper tantrums and aggression.
Stimulant medication
Some medications such as methylphenidate or dexamphetamine may reduce hyperactivity and improve concentration (see Factsheet 6 on stimulant medication). Medication produces a short-lived improvement after each dose, but is not a permanent cure. It creates a period when the child can learn and practise new skills. Children often say that medication helps them to get on with people, to think more clearly, to understand things better and to feel more in control of themselves. Not all affected children need medication. Those who do always need psychological and educational support as well.
Changing diet and avoiding additives
There is a small body of evidence about the effect of diet on some children. A few may be sensitive to certain foods. If parents notice that specific foods worsen hyperactivity, these may be avoided. It is best to discuss this with the specialist.
Do children grow out of it?
Children who receive specialist treatment tailored to their needs may benefit considerably. Some problems with restlessness, attention and lack of control might continue into adult life. However, with help, most hyperactive children will have settled down by the time they reach their mid-teens. They will have been able to catch up with their learning, improve their school performance and make friends.
References
▪ Carr, A. (ed.) (2000) 'What Works with Children and Adolescents?' - A Critical Review of Psychological Interventions with Children, Adolescents and their Families. London: Brunner-Routledge.
▪ National Institute for Clinical Excellence (2000) 'Guidance on Methylphenidate' (Ritalin/Equasym) - for Attention Deficit Hyperactivity Disorder (ADHD). .uk
Pervasive Developmental Disorders
|Table of Contents |
|Introduction |
|Definition of PDD |
|The Cause of PDDNOS |
|Symptoms and Signs |
|Diagnosing... |
|Special Education |
|Treatment |
|Parent Groups |
|Conclusion |
|References |
|Resources |
|Organizations |
Fact Sheet 20 (FS20)
1998, Resources updated, October 2003
Approx. 26 pages when printed.
PDF version
Introduction
Every year the National Dissemination Center for Children with Disabilities (NICHCY) receives thousands of requests for information about the diagnosis, educational programming, and special needs of children and youth with Pervasive Developmental Disorders (PDD). Over the past few years, PDD has become a subject of increased attention among parents, professionals, and policymakers across the country.
NICHCY developed this Briefing Paper in response to the growing concern about, and interest in, this disability. This publication is designed to answer some of the most commonly asked questions regarding PDD and to provide concerned individuals with other resources for information and support.
The term Pervasive Developmental Disorders was first used in the 1980s to describe a class of disorders. This class of disorders has in common the following characteristics: impairments in social interaction, imaginative activity, verbal and nonverbal communication skills, and a limited number of interests and activities that tend to be repetitive.
The manual used by physicians and mental health professionals as a guide to diagnosing disorders is the Diagnostic and Statistical Manual of Mental Disorders (DSM). The DSM was last revised in 1994. In this latest revision, known as the DSM-IV, five disorders are identified under the category of Pervasive Developmental Disorders: (1) Autistic Disorder, (2) Rett's Disorder, (3) Childhood Disintegrative Disorder, (4) Asperger's Disorder, and (5) Pervasive Developmental Disorder Not Otherwise Specified, or PDDNOS. (Editor's note in 2003: The current version of the DSM is the DSM-IV-TR, published in 2000. The categorization of PDD that is described in this Briefing Paper has not changed.)
Many of the questions parents and education professionals ask NICHCY have to do with children who have been diagnosed with "PDD." Doctors are divided on the use of the term PDD. Many professionals use the term PDD as a short way of saying PDDNOS. Some doctors, however, are hesitant to diagnose very young children with a specific type of PDD, such as Autistic Disorder, and therefore only use the general category label of PDD. This approach contributes to the confusion about the term, because the term PDD actually refers to a category of disorders and is not a diagnostic label. The appropriate diagnostic label to be used is PDDNOS--Pervasive Developmental Disorder Not Otherwise Specified--not PDD (the umbrella category under which PDDNOS is found).
Accordingly, this Briefing Paper will use the term PDD to refer to the overall category of Pervasive Developmental Disorders and the term PDDNOS to refer to the specific disorder, Pervasive Developmental Disorder Not Otherwise Specified. The majority of this Briefing Paper will focus on PDDNOS.
All of the disorders that fall under the category of PDD share, to some extent, similar characteristics. To understand how the disorders differ and how they are alike, it's useful to look at the definition of each disorder. Therefore, before we begin our discussion of PDDNOS, let us look first at the definition of the general category PDD and its specific disorders.
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Definition of the PDD Category and its Five Specific Disorders
All types of PDD are neurological disorders that are usually evident by age 3. In general, children who have a type of PDD have difficulty in talking, playing with other children, and relating to others, including their family.
According to the definition set forth in the DSM-IV (American Psychiatric Association, 1994), Pervasive Developmental Disorders are characterized by severe and pervasive impairment in several areas of development:
• social interaction skills;
• communication skills; or
• the presence of stereotyped behavior, interests, and activities. (p. 65)
The Five Types of PDD
(1) Autistic Disorder. Autistic Disorder, sometimes referred to as early infantile autism or childhood autism, is four times more common in boys than in girls. Children with Autistic Disorder have a moderate to severe range of communication, socialization, and behavior problems. Many children with autism also have mental retardation. The DSM-IV criteria by which Autistic Disorder is diagnosed are presented below.
Diagnostic Criteria for Autistic Disorder
A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
(1) qualitative impairment in social interaction, as manifested by at least two of the following:
(a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(b) failure to develop peer relationships appropriate to developmental level
(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
(d) lack of social or emotional reciprocity
(2) qualitative impairments in communication as manifested by at least one of the following:
(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
(b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
(c) stereotyped and repetitive use of language or idiosyncratic language
(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
(3) restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(b) apparently inflexible adherence to specific, nonfunctional routines or rituals
(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(d) persistent preoccupation with parts of objects
B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder. (APA, 1994, pp. 70-71)
(Reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Copyright 1994 American Psychiatric Association.)
(2) Rett's Disorder. Rett's Disorder, also known as Rett Syndrome, is diagnosed primarily in females. In children with Rett's Disorder, development proceeds in an apparently normal fashion over the first 6 to 18 months at which point parents notice a change in their child's behavior and some regression or loss of abilities, especially in gross motor skills such as walking and moving. This is followed by an obvious loss in abilities such as speech, reasoning, and hand use. The repetition of certain meaningless gestures or movements is an important clue to diagnosing Rett's Disorder; these gestures typically consist of constant hand-wringing or hand-washing (Moeschler, Gibbs, & Graham 1990). The diagnostic criteria for Rett's Disorder as set forth in the DSM-IV appear below.
Diagnostic Criteria for Rett's Disorder
A. All of the following:
(1) apparently normal prenatal and perinatal development
(2) apparently normal psychomotor development through the first 5 months after birth
(3) normal head circumference at birth
B. Onset of all of the following after the period of normal development
(1) deceleration of head growth between ages 5 and 48 months
(2) loss of previously acquired purposeful hand skills between ages 5 and 30 months with the subsequent development of stereotyped hand movements (e.g., hand-wringing or hand washing)
(3) loss of social engagement early in the course (although often social interaction develops later)
(4) appearance of poorly coordinated gait or trunk movements
(5) severely impaired expressive and receptive language development with severe psychomotor retardation. (APA, 1994, pp. 72-73)
(Reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Copyright 1994 American Psychiatric Association.)
(3) Childhood Disintegrative Disorder. Childhood Disintegrative Disorder, an extremely rare disorder, is a clearly apparent regression in multiple areas of functioning (such as the ability to move, bladder and bowel control, and social and language skills) following a period of at least 2 years of apparently normal development. By definition, Childhood Disintegrative Disorder can only be diagnosed if the symptoms are preceded by at least 2 years of normal development and the onset of decline is prior to age 10 (American Psychiatric Association, 1994). DSM-IV criteria are presented below.
Diagnostic Criteria for Childhood Disintegrative Disorder
A. Apparently normal development for at least the first 2 years after birth as manifested by the presence of age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior.
B. Clinically significant loss of previously acquired skills (before age 10 years) in at least two of the following areas:
(1) expressive or receptive language
(2) social skills or adaptive behavior
(3) bowel or bladder control
(4) play
(5) motor skills
C. Abnormalities of functioning in at least two of the following areas:
(1) qualitative impairment in social interaction (e.g., impairment in nonverbal behaviors, failure to develop peer relationships, lack of social or emotional reciprocity)
(2) qualitative impairments in communication (e.g., delay or lack of spoken language, inability to initiate or sustain a conversation, stereotyped and repetitive use of language, lack of varied make-believe play)
(3) restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, including motor stereotypes and mannerisms
D. The disturbance is not better accounted for by another specific Pervasive Developmental Disorder or by Schizophrenia. (APA, 1994, pp. 74-75)
(Reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Copyright 1994 American Psychiatric Association.)
(4) Asperger's Disorder. Asperger's Disorder, also referred to as Asperger's or Asperger's Syndrome, is a developmental disorder characterized by a lack of social skills; difficulty with social relationships; poor coordination and poor concentration; and a restricted range of interests, but normal intelligence and adequate language skills in the areas of vocabulary and grammar. Asperger's Disorder appears to have a somewhat later onset than Autistic Disorder, or at least is recognized later. An individual with Asperger's Disorder does not possess a significant delay in language development; however, he or she may have difficulty understanding the subtleties used in conversation, such as irony and humor. Also, while many individuals with autism have mental retardation, a person with Asperger's possesses an average to above average intelligence (Autism Society of America, 1995). Asperger's is sometimes incorrectly referred to as "high-functioning autism." The diagnostic criteria for Asperger's Disorder as set forth in the DSM-IV are presented below.
Diagnostic Criteria for Asperger's Disorder
A. Qualitative impairment in social interaction, as manifested by at least two of the following:
(1) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(2) failure to develop peer relationships appropriate to developmental level
(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
(4) lack of social or emotional reciprocity
B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(2) apparently inflexible adherence to specific, nonfunctional routines or rituals
(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(4) persistent preoccupation with parts of objects
C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
D. There is no clinically significant general delay in language (e.g., single word used by age 2 years, communicative phrases used by age 3 years).
E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
F. Criteria are not met for another specific Pervasive Developmental Disorder, or Schizophrenia. (APA, 1994, p. 77)
(Reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Copyright 1994 American Psychiatric Association.)
(5) Pervasive Developmental Disorder Not Otherwise Specified. Children with PDDNOS either (a) do not fully meet the criteria of symptoms clinicians use to diagnose any of the four specific types of PDD above, and/or (b) do not have the degree of impairment described in any of the above four PDD specific types.
According to the DSM-IV, this category should be used "when there is a severe and pervasive impairment in the development of social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder" (American Psychiatric Association, 1994, pp. 77-78).
The Confusion of Diagnostic Labels
The intent behind the DSM-IV is that the diagnostic criteria not be used as a checklist but, rather, as guidelines for diagnosing pervasive developmental disorders. There are no clearly established guidelines for measuring the severity of a person's symptoms. Therefore, the line between autism and PDDNOS is blurry (Boyle, 1995).
As discussed earlier, there is still some disagreement among professionals concerning the PDDNOS label. Some professionals consider "Autistic Disorder" appropriate only for those who show extreme symptoms in every one of several developmental areas related to autism. Other professionals are more comfortable with the term Autistic Disorder and use it to cover a broad range of symptoms connected with language and social dysfunction. Therefore, an individual may be diagnosed by one practitioner as having Autistic Disorder and by another practitioner as having PDDNOS (or PDD, if the practitioner is abbreviating for PDDNOS).
Generally, an individual is diagnosed as having PDDNOS if he or she has some behaviors that are seen in autism but does not meet the full DSM-IV criteria for having Autistic Disorder. Despite the DSM-IV concept of Autistic Disorder and PDDNOS being two distinct types of PDD, there is clinical evidence suggesting that Autistic Disorder and PDDNOS are on a continuum (i.e., an individual with Autistic Disorder can improve and be rediagnosed as having PDDNOS, or a young child can begin with PDDNOS, develop more autistic features, and be rediagnosed as having Autistic Disorder).
To add to the list of labels that parents, teachers, and others may encounter, a new classification system was recently developed by ZERO TO THREE: National Center for Infants, Toddlers, and Families (1994). Under this system, called the Diagnostic Classification of Mental Health and Developmental Disorders of Infancy and Early Childhood, the term Multisystem Developmental Disorder, or MSDD, is used to describe pervasive developmental disorders.
However, amidst all this confusion, it is very important to remember that, regardless of whether a child's diagnostic label is autism, PDDNOS, or MSDD, his or her treatment is similar.
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The Cause of PDDNOS
Both behavioral and biological studies have generated sufficient evidence to suggest that PDDNOS is caused by a neurological abnormality--problems with the nervous system. However, no specific cause or causes have been identified.
While studies have found various nervous-system problems, no single problem has been consistently found, and exact causes are far from clear. This may be due to the current approach of defining PDDNOS based on behaviors (as opposed to, say, genetic testing). Hence, it is possible that PDDNOS is the result of several different conditions. If this is the case, it is anticipated that future studies will identify a range of causes.
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The Symptoms and Signs of PDDNOS
Generally, children are 3 to 4 years old before they exhibit enough symptoms for parents to seek a diagnosis. There is no set pattern of symptoms and signs in children with PDDNOS. It is important to realize that a very wide range of diversity is seen in children with PDDNOS. All the items of behavior described in this section are common in these children, but a single child seldom shows all the features at one time. In other words, all children with PDDNOS do not have the same degree or intensity of the disorder. PDDNOS can be mild, with the child exhibiting a few symptoms while in the school or neighborhood environment. Other children may have a more severe form of PDDNOS and have difficulties in all areas of their lives. Because of the possibility that PDDNOS and Autistic Disorder are on a continuum, many clinical features described in the following section are very similar to those being described in the literature for Autistic Disorder.
Deficits in Social Behavior
Some infants with PDDNOS tend to avoid eye contact and demonstrate little interest in the human voice. They do not usually put up their arms to be picked up in the way that typical children do. They may seem indifferent to affection and seldom show facial responsiveness. As a result, parents often think the child is deaf. In children with fewer delays, lack of social responsiveness may not be obvious until well into the second or third year of life.
In early childhood, children with PDDNOS may continue to show a lack of eye contact, but they may enjoy a tickle or may passively accept physical contact. They do not develop typical attachment behavior, and there may seem to be a failure to bond. Generally, they do not follow their parents about the house. The majority do not show normal separation or stranger anxiety. These children may approach a stranger almost as readily as they do their parents. Many such children show a lack of interest in being with or playing with other children. They may even actively avoid other children.
In middle childhood, such children may develop a greater awareness or attachment to parents and other familiar adults. However, social difficulties continue. They still have problems with group games and forming peer relationships. Some of the children with less severe PDDNOS may become involved in other children's games.
As these children grow older, they may become affectionate and friendly with their parents and siblings. However, they still have difficulty understanding the complexity of social relationships. Some individuals with less severe impairments may have a desire for friendships. But a lack of response to other people's interests and emotions, as well as a lack of understanding of humor, often results in these youngsters saying or doing things that can slow the development of friendships.
Impairment in Nonverbal Communication
In early childhood, children with PDDNOS may develop the concrete gesture of pulling adults by the hand to the object that is wanted. They often do this without the typical accompanying facial expression. They seldom nod or shake their heads to substitute for or to accompany speech. Children with PDDNOS generally do not participate in games that involve imitation. They are less likely than typical children to copy their parents' activity.
In middle and late childhood, such children may not frequently use gestures, even when they understand other people's gestures fairly well. Some children do develop imitative play, but this tends to be repetitive.
Generally, children with PDDNOS are able to show joy, fear, or anger, but they may only show the extreme of emotions. They often do not use facial expressions that ordinarily show subtle emotion.
Impairment in Understanding Speech
Comprehension of speech in children with PDDNOS is impaired to varying degrees, depending on where the child is within the wide spectrum of PDDNOS. Individuals with PDDNOS who also have mental retardation may never develop more than a limited understanding of speech. Children who have less severe impairments may follow simple instructions if given in an immediate context or with the aid of gestures (e.g., telling the child to "put your glass on the counter," while pointing to the counter). When impairment is mild, only the comprehension of subtle or abstract meanings may be affected. Humor, sarcasm, and common sayings (e.g., "it's raining cats and dogs") can be confusing for individuals with the most mild PDDNOS.
Impairment in Speech Development
Many infants with PDDNOS do not babble, or may begin to babble in their first year but then stop. When the child develops speech, he or she often exhibits abnormalities. Echolalia (seemingly meaningless repetition of words or phrases) may be the only kind of speech some children acquire. Though echolalic speech might be produced quite accurately, the child may have limited comprehension of the meaning. In the past, it was thought that echolalia had no real function. More recent studies have found that echolalia can serve several functions, such as self-stimulation (when a child says words or phrases repeatedly without a communicative purpose--just because it feels good); as a step between a child being nonverbal and verbal; or as a way to communicate (Prizant & Rydell, 1993). Other children develop the appropriate use of phrases copied from others. This is often accompanied by pronoun reversal in the early stages of language development. For instance, when the child is asked "How are you?" he or she may answer "You are fine."
The actual production of speech may be impaired. The child's speech may be like that of a robot, characterized by a monotonous, flat delivery with little change in pitch, change of emphasis, or emotional expression.
Problems of pronunciation are common in young children with PDDNOS, but these often diminish as the child gets older. There may be a striking contrast between clearly enunciated echolalic speech and poorly pronounced spontaneous speech. Some children have a chanting or singsong speech, with odd prolongation of sounds, syllables, and words. A question-like intonation may be used for statements. Odd breathing rhythms may produce staccato speech in some children.
Abnormal grammar is frequently present in the spontaneous speech of verbal children with PDDNOS. As a result:
• phrases may be telegraphic (brief and monotone) and distorted;
• words of similar sound or related meaning may be muddled;
• some objects may be labeled by their use;
• new words may be coined; and
• prepositions, conjunctions, and pronouns may be dropped from phrases or used incorrectly.
When children with PDDNOS do develop functional speech, they may not use it in ordinary ways. Such children tend to rely on repetitive phrases. Their speech does not usually convey imagination, abstraction, or subtle emotion. They generally have difficulty talking about anything outside of the immediate context. They may talk excessively about their special interests, and they may talk about the same pieces of information whenever the same subject is raised. The most able persons can exchange concrete pieces of information that interest them, but once the conversation departs from this level, they can become lost and may withdraw from social contact. Ordinary to-and-fro conversational chatter is lacking. Thus, they give the impression of talking "at" someone, rather than "with" someone.
Unusual Patterns of Behavior
The unusual responses of children with PDDNOS to the environment take several forms.
Resistance to change
Many children are upset by changes in the familiar environment. Even a minor change of everyday routine may lead to tantrums. Some children line up toys or objects and become very distressed if these are disturbed. Efforts to teach new activities may be resisted.
Ritualistic or compulsive behaviors
Ritualistic or compulsive behaviors usually involve rigid routines (e.g., insistence on eating particular foods) or repetitive acts, such as hand flapping or finger mannerisms (e.g., twisting, flicking movements of hands and fingers carried out near the face). Some children develop preoccupations; they may spend a great deal of time memorizing weather information, state capitals, or birth dates of family members.
Abnormal attachments and behaviors
Some children develop intense attachments to odd objects, such as pipe cleaners, batteries, or film canisters. Some children may have a preoccupation with certain features of favored objects, such as their texture, taste, smell, or shape.
Unusual responses to sensory experiences
Many children may seem underresponsive or overresponsive to sensory stimuli. Thus, they may be suspected of being deaf or visually impaired. It is common for such young children to be referred for hearing and vision tests. Some children avoid gentle physical contact, yet react with pleasure to rough-and-tumble games. Some children carry food preferences to extremes, with favored foods eaten to excess. Some children limit their diet to a small selection, while others are hearty eaters who do not seem to know when they are full.
Disturbance of Movement
The typical motor milestones (e.g., throwing, catching, kicking) may be delayed but are often within the normal range. Young children with PDDNOS usually have difficulty with imitation skills, such as clapping hands. Many such children are very overactive, yet tend to become less overactive in adolescence. Children with PDDNOS may exhibit characteristics such as grimacing, hand flapping or twisting, toe walking, lunging, jumping, darting or pacing, body rocking and swaying, or head rolling or banging. In some cases the behaviors appear only from time to time; in other cases they are present continuously.
Intelligence and Cognitive Deficits
Generally, children with PDDNOS do very well on tests requiring manipulative or visual skills or immediate memory, while they do poorly on tasks demanding symbolic or abstract thought and sequential logic. The process of learning and thinking in these children is impaired, most particularly in the capacity for imitation, comprehension of spoken words and gestures, flexibility, inventiveness, learning and applying rules, and using acquired information. Yet, a small number of children with PDDNOS show excellent rote memories and special skills in music, mechanics, mathematics, and reading.
Because many children with PDDNOS are either without functional speech or otherwise untestable, some people question the validity of testing their intelligence. Moreover, it has been observed that a number of these children show major improvements in other developmental areas during the follow-up period without a change in their tested IQ. Follow-up studies have also shown that retardation present at the time of initial diagnosis tends to persist. Those children with a low IQ show more severely impaired social development. They are more likely to display unusual social responses, such as touching or smelling people, ritualistic behavior, or self-injury.
Associated Features
The emotional expression of some children with PDDNOS may be flattened, excessive, or inappropriate to the situation. For no obvious reason, they may scream or sob inconsolably one time, yet giggle and laugh hysterically another time. Real dangers, such as moving vehicles or heights, may be ignored, yet the same child might seem frightened of a harmless object, such as a particular stuffed animal.
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Beginning the Search for Information
Sam was an active and busy child. But his parents were worried about him. Compared with the other 3-year-olds they knew, Sam was different--he wasn't talking and he didn't seem to want or try to play with his sister. At day care Sam wouldn't join in any activities with the other kids, but he really enjoyed playing with water. He would splash and play at the sink for hours, with a big smile on his face. After about a year of expressing concern to their pediatrician, Sam's parents finally obtained a referral to a developmental psychologist who diagnosed Sam as having PDDNOS. The pediatrician also suggested that they get the school to test Sam. The school tested him and said he had autism. No one seemed to know anything about PDDNOS, and although Sam's parents had heard of autism, they didn't know much about it. They began their search for information on what PDDNOS was and what autism was.
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Diagnosing PDDNOS
The DSM-IV suggests that the diagnostic label of PDDNOS be used when there is a severe and pervasive impairment in the development of reciprocal social interaction, verbal and nonverbal communication skills, or the development of seemingly meaningless repetitive behavior, interests, and activities, but when the criteria are not completely met for a specific disorder within the category PDD (e.g., Autistic Disorder, Rett's Disorder, Asperger's Disorder). However, the DSM-IV framework has not offered specific techniques or criteria for diagnosing PDDNOS.
No Specific Test Available
Currently, no objective biological test, such as a blood test or an X-ray examination, can confirm a child's PDDNOS diagnosis. Diagnosing PDDNOS is complicated and much like putting together a jigsaw puzzle that does not have a clear border and picture. Therefore, it is reasonable to say that, when a PDDNOS diagnosis is made, it reflects the clinician's best guess. Obtaining an accurate diagnosis requires an assessment conducted by a well-trained professional who specializes in developmental disorders, usually a child psychiatrist, developmental pediatrician, pediatric neurologist, developmental pediatrician, child psychologist, developmental psychologist, or neuropsychologist.
PDDNOS Assessment
The purpose of PDDNOS assessment is twofold: to gather information to formulate an accurate diagnosis and to provide information that will form the basis of an appropriate intervention plan for the individual child and family. Assessment of PDDNOS usually includes the following elements:
Medical assessment
The medical evaluation should include a thorough birth, developmental, medical, and family history, and a full physical and neurological examination. Not all children with PDDNOS require laboratory tests such as a chromosome study, including a test for Fragile X, an EEG (which measures the brain's electrical activity), or a brain scan such as MRI (an X-ray that gives a picture of the brain's anatomy). The primary care physician determines if these are needed. Although the cause of PDDNOS is generally unknown, the physician may discuss some medical conditions that do not cause PDDNOS but tend to be found in such children--for example, seizure disorder. Associated conditions can cause or worsen a child's problems.
Interviews with the parents, child, and child's teacher
A child with PDDNOS may exhibit different abilities and behaviors in different settings or situations. Parents and teachers can provide information about behaviors not observed during the formal testing sessions.
Behavior rating scales
Checklists of possible problems should be completed by parents or caretakers familiar with the child. Many diagnosticians use the checklist for autism. However, no scale has yet been developed specifically to determine the diagnosis of PDDNOS.
Direct behavioral observations
The child's behavior is recorded as it happens, and assessment results are often graphed to aid interpretation. This type of assessment can be carried out either in an artificial situation (e.g., a child taking an intelligence test) or in a natural situation (e.g., a child's home or classroom).
Psychological assessment
The psychologist uses standardized instruments to evaluate the child's cognitive, social, emotional, behavioral, and adaptive functioning. Parents learn in which areas of development their child exhibits delays.
Educational assessment
Both formal assessment (such as the use of standardized tests) and informal assessment (such as direct observation and interviewing the parents) should be used to evaluate the child on the following points:
• preacademic skills (e.g., shape and letter naming),
• academic skills (e.g., reading and arithmetic),
• daily living skills (e.g., toileting, dressing, eating), and
• learning style and problem-solving approaches.
Communication assessment
Formal testing, observational assessment, and interviewing the child's parents are all useful strategies for assessing communication skills. It is important to assess a range of communication skills, including the child's interest in communication, why (for what purpose) the child communicates, the content and context of the communication, how the child communicates (including facial expression, posture, gestures, etc.), and how well the child understands when others communicate with him or her. Assessment results should be used when designing a communication program for the child. This may incorporate one or more alternative forms to spoken communication, such as sign language and/or using a communication board (i.e., pointing to pictures to express oneself).
Occupational assessment
An occupational therapist may evaluate the child to determine the nature of his or her sensory integrative functioning: how the child's different senses--hearing, sight, taste, smell, touch--work together. Standardized tools are used to assess fine motor skills (such as using fingers to pick up small objects), gross motor skills (such as running and jumping), whether the child is right or left handed, and various visual skills (such as depth perception).
Evaluation summary
The professional evaluating a child will use all the information collected through these varying techniques to decide whether that child has a disability that falls under the category of PDD. Assessment and evaluation can be done through the child's local public school or a private practitioner.
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Special Education and PDDNOS
By law, schools must make special services available to eligible children with disabilities. These services are called special education and related services (discussed more below). The law that requires this is the Individuals with Disabilities Education Act, or IDEA. Under the IDEA, school-aged children who are thought to have a disability must be evaluated by the public schools at no cost to parents. Based on the evaluation, a determination is made as to their eligibility for services.
IDEA defines categories of disability under which a child is considered eligible for services. These categories are: autism, deaf-blindness, hearing impairments including deafness, mental retardation, other health impairments, orthopedic impairments, serious emotional disturbance, specific learning disabilities, speech or language impairments, traumatic brain injury, visual impairments including blindness, or multiple disabilities. If permitted by the state and the local educational agency, a school may also provide services to a student, from age 3 through age 9, under the separate category of "developmental delay." Parents should check with their state department of special education to find out what guidelines their state uses.
It's important to realize that a child may have a disability and still not be eligible for special education and related services. For a child to be determined to be eligible, the child's disability must adversely affect his or her educational performance.
Special education is instruction that is specially designed to meet a child's unique educational needs. Related services can include a range of services that are provided to help the student benefit from his or her special education. Related services include (but are not limited to) such services as occupational therapy, speech therapy, or physical therapy. Both special education and related services must be provided at no cost to the parents; both can be extremely beneficial for children with PDDNOS.
Services to very young children are also covered under the IDEA. Through the Program for Infants and Toddlers with Disabilities, states make early intervention services available to eligible infants and toddlers (birth through two years). Not all services are free; some may be provided on a sliding-scale basis (in other words, according to the parents' ability to pay).
Early intervention services are designed to meet the developmental needs of the infant or toddler in areas such as their physical development, cognitive development, communication development, social or emotional development, or adaptive development. Services include (but are not limited to) such services as: family training and home visits, special instruction, speech-language pathology, vision services, and occupational therapy. To the maximum extent appropriate, early intervention services are to be provided in natural environments, including the home and community settings in which children without disabilities participate.
The IFSP and the IEP
The majority of school-aged children with PDDNOS will need some special education services, just as those who are younger will need early intervention services. If a school-aged child is found eligible for services, the parents and the school will develop an Individualized Education Program (IEP). This is a document that lists, among other things, the child's strengths and weaknesses, and what special education and related services the school will provide to address those needs. If the child is less than 3 years old, he or she will have an Individualized Family Service Plan, (IFSP). Parents can contact their state parent training and information center (PTI) or NICHCY for helpful information about IEP or IFSP development and the special education process.
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A Mother's Story
Ryan, always in a whirl of activity, has had many labels. He was diagnosed with PDDNOS at age three and a half. When he went to preschool, his label was "developmentally delayed." Now he's 8 years old, and his label is "autistic." He spends most of his time in a 2nd grade class. He's doing great, but he still needs lots of extra help--speech therapy, occupational therapy, and physical therapy. He loves playing soccer with kids in his class. His disability is only one part of who he is; he also has lots of strengths and talents. Every day still has its challenges, but we love him. He's not a label--he's Ryan.
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Treatment of PDDNOS
On the whole, children with PDDNOS share the social and communicative disabilities found in children with Autistic Disorder. They often need services or treatments similar to those provided to children with autism.
Traditional Methods
No one therapy or method will work for all individuals with Autistic Disorder or PDDNOS. Many professionals and families will use a range of treatments simultaneously, including behavior modification, structured educational approaches, medications, speech therapy, occupational therapy, and counseling. These treatments promote more typical social and communication behavior and minimize negative behaviors (e.g., hyperactivity, meaningless, repetitive behavior, self-injury, aggressiveness) that interfere with the child's functioning and learning. There has been an increasing focus on treating preschool children with PDDNOS by working closely with family members to help the children cope with the problems encountered at home before they enter school. Many times, the earlier these children begin treatment, the better the outcome.
Addressing behavior issues
As children with PDDNOS struggle to make sense of the many things that are confusing to them, they do best in an organized environment where rules and expectations are clear and consistent. The child's environment needs to be very structured and predictable.
Many times a behavior problem indicates that the child is trying to communicate something--confusion, frustration or fear. Think of the child's behavior problem as a message to be decoded. Try to determine the possible cause of the behavior. Has the child's routine or schedule changed recently? Has something new been introduced that may be distressing or confusing the child? When a child's communication skills improve, behavior problems often diminish--the child now has a means of expressing what is bothering him or her, without resorting to negative behavior.
The use of positive behavioral support strategies for these children has proved effective. It is important to remember that:
1. Programs should be designed on an individual basis, because children vary greatly in their disabilities and abilities. Treatment approaches that work in certain cases may not work in others.
2. Children with PDDNOS have difficulty generalizing from one situation to another. The skills they have learned in school tend not to be transferred to the home or other settings. It is very important to be consistent in the treatment of a problem across all areas of the child's life--school, community, and home. This encourages generalization of behavior changes.
3. A home-community-based approach, which trains parents and special education teachers to carry out positive behavioral support strategies, can be instrumental in achieving maximum results.
Appropriate educational program
Education is the primary tool for treating PDDNOS. Many children with PDDNOS experience the greatest difficulty in school, where demands for attention and impulse control are virtual requirements for success. Behavioral difficulties can prevent some children from adapting to the classroom. However, with appropriate educational help, a child with PDDNOS can succeed in school.
The most essential ingredient of a quality educational program is a knowledgeable teacher. Other elements of a quality educational program include:
• structured, consistent, predictable classes with schedules and assignments posted and clearly explained;
• information presented visually as well as verbally;
• opportunities to interact with nondisabled peers who model appropriate language, social, and behavioral skills;
• a focus on improving a child's communications skills using tools such as communication devices;
• reduced class size and an appropriate seating arrangement to help the child with PDDNOS avoid distraction;
• modified curriculum based on the particular child's strengths and weaknesses;
• using a combination of positive behavioral supports and other educational interventions; and
• frequent and adequate communication among teachers, parents, and the primary care clinician.
Medical treatment
The primary aim of medical treatment of children with PDDNOS is to ensure physical and psychological health. A good preventive health care program should include regular physical checkups to monitor growth, vision, hearing, and blood pressure; immunization according to schedule; regular visits to the dentist; and attention to diet and hygiene. An effective medical treatment begins with a thorough medical assessment. The pretreatment assessment is essential for detecting existing medical conditions, such as a seizure disorder.
There is no one specific medication that helps all children with PDDNOS. Some medications have been found to be helpful, but for many children with autism or PDDNOS, medication levels need to be experimented with until the optimal combination and dosage are found. Since this differs with each child, there is no set medical treatment for children with PDDNOS but, rather, an individual medication regimen for each. Because of these complexities, in the eyes of many, medication therapy is viewed as a treatment to be used only when other types of treatment have been unsuccessful. It is important to note that medication can be effective and necessary for conditions that may coexist in children with PDDNOS, such as attention deficit disorder or obsessive compulsive disorder.
Parents' final decision on whether to use medication as part of their child's therapy is a personal one and should be respected and supported. Medication should always be used in conjunction with other therapies, and its effects should be monitored through feedback from the child, parents, and teachers.
Psychological treatment
Counseling may be helpful to families to help them adjust to raising a child with a disability. If the child is already attending a school program, both parents and teachers need to be told of the symptoms of PDDNOS and how those symptoms may affect the child's ability to function at home, in the neighborhood, in school, and in social situations. Psychologists can also provide ongoing assessments, school consultation, case management, and behavior training. Some children also benefit from counseling from an experienced practitioner who knows about PDDNOS. Family teamwork can ease the burden on the primary home caregiver, who needs a support system.
Other Therapies and Treatments
While exploring the treatment options available to help children with PDDNOS, parents and others may come across several therapies that can be used in conjunction with traditional ones. When considering one of these other therapies for a child, ask questions and carefully assess the program. It's important to ask for a written description of the program, including its length, the frequency of sessions, cost, and the rationale, philosophy, or purpose underlying the program. It's also important to investigate the credentials of the program director and staff and whether evidence exists to prove the effectiveness of the program, as well as the possible negative side effects. Here are some alternative programs available:
Facilitated communication
This is a method of encouraging people with communication impairments to express themselves. By providing physical assistance, a person, called a facilitator, helps the individual to spell words using a keyboard of a typewriter or computer or other letter display. Facilitation may involve hand-over-hand support or a simple touch on the shoulder. The individual with the impairment initiates the movement while the facilitator offers physical support.
Successful anecdotes of Facilitated Communication therapy have been reported and published over the past few years. They have also provoked considerable controversy, because generally they have not been supported by empirical research. It appears that Facilitated Communication has the potential for becoming a useful technique for some children with PDDNOS, particularly those who are precocious readers and good with other forms of communication such as computer and signs, but who also are severely impaired in verbal expression skills.
Auditory integration therapy (AIT)
AIT uses a device that randomly selects low and high frequencies from a music source (a cassette or CD player) and then sends these sounds through headphones to the child.
There are anecdotes about the positive effects from AIT. Some of the results that have been reported include diminished sensitivity to sounds, more spontaneous speech, more complex language development, answering questions on topic, more interaction with peers, and more appropriate social behavior. However, significant results from a well-designed treatment study have not been available. It is still unclear how AIT works and whether people benefit from it.
Sensory integration therapy
Sensory integration is the nervous system's process of organizing sensory information for functional use. It refers to a normally occurring process in the brain that allows people to put sights, sounds, touch, taste, smells, and movements together to understand and interact with the world around them (Mailloux & Lacroix, 1992).
On the basis of assessment results, an occupational therapist who has been trained in sensory integration therapy guides an individual through activities that challenge his or her ability to respond appropriately to sensory stimulation. This type of therapy is directed toward improving how an individual's senses process stimulation and work together to respond appropriately. As with other therapies, no conclusive research demonstrates clear progress made through sensory integration therapy, but it is used in many areas.
The Lovaas method
This method (which is a type of Applied Behavior Analysis [ABA]), developed by psychologist Ivar Lovaas at UCLA, is an intensive intervention program originally designed for preschool-aged children with autism. It uses behavioral techniques--molding and rewarding desired behavior, and ignoring or discouraging undesirable actions--to achieve its goals. Generally, this method consists of 30 to 40 hours a week of basic language skills, behavior, and academic training. Therapy usually consists of 4 to 6 hours per day of one-on-one training, 5 to 7 days a week. Some research has shown remarkable progress in about 50% of the children receiving this therapy. The Lovaas Method is getting wide attention, but, as with other therapies, it needs more study.
Vitamin therapy
Some anecdotal evidence has shown that Vitamin B6 and magnesium help children with autism and PDDNOS. The rationale for this is that Vitamin B6 helps the formation of neurotransmitters, which are thought to malfunction in such children (Dalldorf, 1995).
Dietary intervention
Some individuals with PDDNOS have been found to have food sensitivities or food allergies. Some parents choose to have their children evaluated by allergists and, based on the testing results, may eliminate or decrease foods to which their child shows the most sensitivity. For example, some foods seem to increase hyperactivity and autistic-like behavior. Eliminating these from the child's diet has been found to help decrease negative behaviors.
Anti-yeast therapy
Often the progression of autism and PDDNOS involves unusual behaviors and communication problems arising around the toddler stage, when many children are treated with antibiotics for problems such as middle ear infections. Antibiotics can upset the intestinal flora and possibly cause "yeast overgrowth." However, the existence of higher yeast levels in children with autism and PDDNOS could very well be coincidence (Dalldorf, 1995). Some parents have found that giving their child an anti-yeast medication decreases some negative behaviors. Some preliminary study findings support this type of treatment; however, the results are not conclusive.
Summary
Since well-designed studies of these therapies have not been conducted, their effectiveness in treating PDDNOS is unclear.
Helping Children at Home
Parents can use many techniques and treatments to help their young child with PDDNOS at home. These techniques should be discussed with other family members and the professionals who are working with the child, so that the individuals close to the child may employ the same methods. This will help the child generalize skills learned at home to other settings, such as at school and in the community. Parents can work at improving communication skills and social skills. See the separate NICHCY Resources on Autism and PDD, available online, for publications on techniques to use with children with PDDNOS.
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Finding a Parent Support Group
Children with PDDNOS are not the only ones who need extra help and support. Parenting a child with special needs is a demanding task. Learning and accepting that a child has a disability is a very emotional process. Initially, parents may feel alone and not know where to begin their search for information, assistance, and support. Parent groups offer parents and families a place to share information, give and receive emotional and practical support, and work as a team to address common goals.
Autism parent support groups are located throughout the country. Families whose child has PDDNOS can benefit from joining these support groups. See "Organizations" at the end of this publication for details.
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Conclusion
Children with PDDNOS happen to have a unique disorder that will make certain parts of life more challenging. Many articles, booklets, and books contain useful information; however, these resources will probably not be found at the local library or bookstore. To get these materials, contact the organizations listed at the end of this Briefing Paper and visit their Web sites. The Internet can be a particularly valuable information-collecting tool. In our separate resource list on autism and PDD, we've listed a number of sites offering materials on these disabilities.
Learning more about the special needs of children with PDDNOS can be of enormous emotional and practical help to those who are involved with, and who care about, these special children.
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References
American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author.
Autism Society of America. (1995). Asperger's Syndrome information package. Bethesda, MD: Author.
Boyle, T. (1995). Diagnosing autism and other pervasive development disorders [excerpt from Autism: Basic information (3rd ed., pp. 6-7)]. Ewing, NJ: The New Jersey Center for Outreach & Services for the Autism Community, Inc. (COSAC).
Mental Retardation
|Table of Contents |
|Matthew's Story |
|What is mental retardation? |
|What causes it? |
|How is it diagnosed? |
|How common is it? |
|What are the signs...? |
|What about school? |
|Tips for parents |
|Tips for teachers |
|Resources |
|Organizations |
Fact Sheet 8 (FS8)
January 2004
Approx. 8 pages when printed.
PDF version
Matthew's Story
Matt is 15 years old. Because Matt has mental retardation, he has been receiving special education services since elementary school. These services have helped him tremendously, because they are designed to fit his special learning needs. Last year he started high school. He, his family, and the school took a good hard look at what he wants to do when secondary school is over. Does he want more education? A job? Does he have the skills he needs to live on his own?
Answering these questions has helped Matt and the school plan for the future. He's always been interested in the outdoors, in plants, and especially in trees. He knows all the tree names and can recognize them by their leaves and bark. So this year he's learning about jobs like forestry, landscaping, and grounds maintenance. Next year he hopes to get a part-time job. He's learning to use public transportation, so he'll be able to get to and from the job. Having mental retardation makes it harder for Matt to learn new things. He needs things to be very concrete. But he's determined. He wants to work outside, maybe in the park service or in a greenhouse, and he's getting ready!
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What is Mental Retardation?
Mental retardation is a term used when a person has certain limitations in mental functioning and in skills such as communicating, taking care of him or herself, and social skills. These limitations will cause a child to learn and develop more slowly than a typical child. Children with mental retardation may take longer to learn to speak, walk, and take care of their personal needs such as dressing or eating. They are likely to have trouble learning in school. They will learn, but it will take them longer. There may be some things they cannot learn.
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What Causes Mental Retardation?
Doctors have found many causes of mental retardation. The most common are:
• Genetic conditions. Sometimes mental retardation is caused by abnormal genes inherited from parents, errors when genes combine, or other reasons. Examples of genetic conditions are Down syndrome, fragile X syndrome, and phenylketonuria (PKU).
• Problems during pregnancy. Mental retardation can result when the baby does not develop inside the mother properly. For example, there may be a problem with the way the baby's cells divide as it grows. A woman who drinks alcohol or gets an infection like rubella during pregnancy may also have a baby with mental retardation.
• Problems at birth. If a baby has problems during labor and birth, such as not getting enough oxygen, he or she may have mental retardation.
• Health problems. Diseases like whooping cough, the measles, or meningitis can cause mental retardation. Mental retardation can also be caused by extreme malnutrition (not eating right), not getting enough medical care, or by being exposed to poisons like lead or mercury.
Mental retardation is not a disease. You can't catch mental retardation from anyone. Mental retardation is also not a type of mental illness, like depression. There is no cure for mental retardation. However, most children with mental retardation can learn to do many things. It just takes them more time and effort than other children.
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How is Mental Retardation Diagnosed?
Mental retardation is diagnosed by looking at two main things. These are:
• the ability of a person's brain to learn, think, solve problems, and make sense of the world (called IQ or intellectual functioning); and
• whether the person has the skills he or she needs to live independently (called adaptive behavior, or adaptive functioning).
Intellectual functioning, or IQ, is usually measured by a test called an IQ test. The average score is 100. People scoring below 70 to 75 are thought to have mental retardation. To measure adaptive behavior, professionals look at what a child can do in comparison to other children of his or her age. Certain skills are important to adaptive behavior. These are:
• daily living skills, such as getting dressed, going to the bathroom, and feeding one's self;
• communication skills, such as understanding what is said and being able to answer;
• social skills with peers, family members, adults, and others.
To diagnose mental retardation, professionals look at the person's mental abilities (IQ) and his or her adaptive skills. Both of these are highlighted in the definition of mental retardation provided between the lines below. This definition comes from the Individuals with Disabilities Education Act (IDEA). The IDEA is the federal law that guides how schools provide early intervention and special education and related services to children with disabilities.
Providing services to help individuals with mental retardation has led to a new understanding of how we define mental retardation. After the initial diagnosis of mental retardation is made, we look at a person's strengths and weaknesses. We also look at how much support or help the person needs to get along at home, in school, and in the community. This approach gives a realistic picture of each individual. It also recognizes that the "picture" can change. As the person grows and learns, his or her ability to get along in the world grows as well.
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IDEA's Definition of "Mental Retardation"
Our nation's special education law, the IDEA, defines mental retardation as . . .
". . . significantly subaverage general intellectual functioning, existing concurrently with deficits in adaptive behavior and manifested during the developmental period, that adversely affects a child's educational performance." [34 Code of Federal Regulations §300.7(c)(6)]
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How Common is Mental Retardation?
As many as 3 out of every 100 people in the country have mental retardation (The Arc, 2001). Nearly 613,000 children ages 6 to 21 have some level of mental retardation and need special education in school (Twenty-fourth Annual Report to Congress, U.S. Department of Education, 2002). In fact, 1 out of every 10 children who need special education has some form of mental retardation.
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What Are the Signs of Mental Retardation?
There are many signs of mental retardation. For example, children with mental retardation may:
• sit up, crawl, or walk later than other children;
• learn to talk later, or have trouble speaking,
• find it hard to remember things,
• not understand how to pay for things,
• have trouble understanding social rules,
• have trouble seeing the consequences of their actions,
• have trouble solving problems, and/or
• have trouble thinking logically.
About 87% of people with mental retardation will only be a little slower than average in learning new information and skills. When they are children, their limitations may not be obvious. They may not even be diagnosed as having mental retardation until they get to school. As they become adults, many people with mild retardation can live independently. Other people may not even consider them as having mental retardation.
The remaining 13% of people with mental retardation score below 50 on IQ tests. These people will have more difficulty in school, at home, and in the community. A person with more severe retardation will need more intensive support his or her entire life. Every child with mental retardation is able to learn, develop, and grow. With help, all children with mental retardation can live a satisfying life.
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What About School?
A child with mental retardation can do well in school but is likely to need individualized help. Fortunately, states are responsible for meeting the educational needs of children with disabilities.
For children up to age three, services are provided through an early intervention system. Staff work with the child's family to develop what is known as an Individualized Family Services Plan, or IFSP. The IFSP will describe the child's unique needs. It also describes the services the child will receive to address those needs. The IFSP will emphasize the unique needs of the family, so that parents and other family members will know how to help their young child with mental retardation. Early intervention services may be provided on a sliding-fee basis, meaning that the costs to the family will depend upon their income. In some states, early intervention services may be at no cost to parents.
For eligible school-aged children (including preschoolers), special education and related services are made available through the school system. School staff will work with the child's parents to develop an Individualized Education Program, or IEP. The IEP is similar to an IFSP. It describes the child's unique needs and the services that have been designed to meet those needs. Special education and related services are provided at no cost to parents.
Many children with mental retardation need help with adaptive skills, which are skills needed to live, work, and play in the community. Teachers and parents can help a child work on these skills at both school and home. Some of these skills include:
• communicating with others;
• taking care of personal needs (dressing, bathing, going to the bathroom);
• health and safety;
• home living (helping to set the table, cleaning the house, or cooking dinner);
• social skills (manners, knowing the rules of conversation, getting along in a group, playing a game);
• reading, writing, and basic math; and
• as they get older, skills that will help them in the workplace.
Supports or changes in the classroom (called adaptations) help most students with mental retardation. Some common changes that help students with mental retardation are listed below under "Tips for Teachers." The resources below also include ways to help children with mental retardation.
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Tips for Parents
• Learn about mental retardation. The more you know, the more you can help yourself and your child. See the list of resources and organizations at the end of this publication.
• Encourage independence in your child. For example, help your child learn daily care skills, such as dressing, feeding him or herself, using the bathroom, and grooming.
• Give your child chores. Keep her age, attention span, and abilities in mind. Break down jobs into smaller steps. For example, if your child's job is to set the table, first ask her to get the right number of napkins. Then have her put one at each family member's place at the table. Do the same with the utensils, going one at a time. Tell her what to do, step by step, until the job is done. Demonstrate how to do the job. Help her when she needs assistance. r Give your child frequent feedback. Praise your child when he or she does well. Build your child's abilities.
• Find out what skills your child is learning at school. Find ways for your child to apply those skills at home. For example, if the teacher is going over a lesson about money, take your child to the supermarket with you. Help him count out the money to pay for your groceries. Help him count the change.
• Find opportunities in your community for social activities, such as scouts, recreation center activities, sports, and so on. These will help your child build social skills as well as to have fun.
• Talk to other parents whose children have mental retardation. Parents can share practical advice and emotional support. Call NICHCY (1.800.695.0285) and ask how to find a parent group near you.
• Meet with the school and develop an educational plan to address your child's needs. Keep in touch with your child's teachers. Offer support. Find out how you can support your child's school learning at home.
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Tips for Teachers
• Learn as much as you can about mental retardation. The organizations listed at the end of this publication will help you identify specific techniques and strategies to support the student educationally. We've also listed some strategies below.
• Recognize that you can make an enormous difference in this student's life! Find out what the student's strengths and interests are, and emphasize them. Create opportunities for success.
• If you are not part of the student's Individualized Education Program (IEP) team, ask for a copy of his or her IEP. The student's educational goals will be listed there, as well as the services and classroom accommodations he or she is to receive. Talk to specialists in your school (e.g., special educators), as necessary. They can help you identify effective methods of teaching this student, ways to adapt the curriculum, and how to address the student's IEP goals in your classroom.
• Be as concrete as possible. Demonstrate what you mean rather than just giving verbal directions. Rather than just relating new information verbally, show a picture. And rather than just showing a picture, provide the student with hands-on materials and experiences and the opportunity to try things out.
• Break longer, new tasks into small steps. Demonstrate the steps. Have the student do the steps, one at a time. Provide assistance, as necessary.
• Give the student immediate feedback.
• Teach the student life skills such as daily living, social skills, and occupational awareness and exploration, as appropriate. Involve the student in group activities or clubs.
• Work together with the student's parents and other school personnel to create and implement an educational plan tailored to meet the student's needs. Regularly share information about how the student is doing at school and at home.
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Resources
American Association on Intellectual and Developmental Disabilities. (2002). Mental retardation: Definition, classification, and systems of supports (10th ed.). Washington, DC: Author. (See contact information below.)
American Association on Intellectual and Developmental Disabilities. (2005). Definition of mental retardation. Washington, DC: Author. (Available online at: Policies/faq_mental_retardation.shtml)
Baker, B., & Brightman, A. (with Blacher, J., Heifetz, L., Hinshaw, S., & Murphy, D.). (2004). Steps to independence: Teaching everyday skills to children with special needs (4th ed.). Baltimore, MD: Paul H. Brookes. (Telephone: 800.638.3775. Web: )
Achieving policy change
Nursing (“nursing” in this instance and throughout the document also includes
midwifery) has long been influenced by a range of people. Politicians, doctors, lawyers,
teachers and civil servants have all had—and in many instances still do have, to a greater
or lesser extent—a significant influence on policy relating to nursing and nursing
regulation, particularly nursing education. In many instances, those who have been
significant by their absence in the policy debate are the nurses themselves.
Among the factors identified as impeding nursing’s involvement in its own affairs
are [2]: the exclusion of nurses from policy-making and decision-making at all levels in
the health care system; the undervaluing of nursing, with its concomitant subordination
to medicine; and sex discrimination. The latter includes the characteristics associated
with work undertaken by a predominantly female workforce: low pay, low status, poor
working conditions, few prospects for promotion and poor education [2]. In another study
undertaken in 1999, the major obstacles to nurse involvement in decision-making,
particularly at the highest level, were again identified as lack of power, inadequate
education and domination of medicine. Nurses also lacked power and authority within
the decision-making processes. In addition, they frequently lacked the knowledge to
present proposals for decision-making [3].
Change can be difficult. It is, however, necessary if nurses are to take the initiative
and seek to influence their own professional destiny. In order to influence change, three
key elements are necessary: education, appropriate knowledge and accurate information
upon which to base decisions. This handbook seeks to address these issues.
For significant change to occur, change in attitude is also frequently necessary on
the part of those with power and influence, particularly in relation to the generosity with
which information is shared within and across professions. A climate in which
knowledge and information is held only by the chosen few militates against progress and
the subsequent development of effective systems based on sound principles. Knowledge
should be seen as a gift to be shared generously for the greater good of all those who will
benefit from effective regulation. Such an approach fits in with the trend towards
decentralization of health care and the associated devolution of authority and
responsibility to the lowest possible levels.ref: who site : emro.who.int/dsaf/dsa189.pdf
Attention deficit hyperactivity disorder (ADHD) and hyperkinetic disorder are disorders with a strong genetic component, characterised from an early age (before 7 years) by disturbances in the areas of attention, impulsiveness and hyperactivity.
The disorders are reputed to be more prevalent in the USA than in the UK, but this is largely the result of the use of less strict diagnostic criteria, which include people with less severe symptoms. Hyperkinetic disorder is the name given to the disorder diagnosed using the stricter ICD-10 criteria; 1.7% of primary school children meet these criteria. ADHD is the name given to the disorder diagnosed using the less strict DSM-IV criteria; 3-6% of primary school children meet these criteria. These disorders are more common in boys.
Contrary to what was previously thought, a significant proportion of children with ADHD continue to have the disorder in late adolescence and some still show symptoms 10 years later, though inattention is more frequently prominent in adults than is hyperactivity. The prevalence of ADHD in young offenders' institutes (YOI) and adult prisons is not known. However, the fact that ADHD is frequently accompanied by conduct disorder, substance misuse and specific learning difficulties means that the prevalence is likely to be significantly higher than in the community. Some young people and adults with the disorder will be unrecognised.
|Mental Health and Substance Abuse |
|Facts and Figures |
|Mental Retardation : from knowledge to action |
|[pic] |
|Introduction |
|When we see people around us, we observe that some lack normal physical abilities. For example, there are people who are unable to see, |
|hear or speak and others who are unable to move around. These people are commonly known as physically disabled. Similarly, there are |
|people who have poor and insufficient development of mental functions, including control over their body movements, their intelligence, |
|social interaction and language, from birth or early childhood. This condition is called mental retardation. |
| |
|Recently, there has been increasing awareness that the term "mental retardation" has a derogatory connotation. Thus, the term "mentally |
|challenged" is being used. However, since the term "mental retardation" is well known to the common man, families with |
|patients and policy-makers, this term will continue to be used in this monograph. |
| |
|At the global level, the last 100 years have seen a greater scientific understanding of people with mental retardation. This has been |
|possible due to rapid advances in psychology, medicine, biochemistry, neurosciences, and other related fields. These advances can help |
|prevent mental retardation, provide better care for those who are |
|already mentally retarded and enable governments to make appropriate policies. |
| |
|This monograph summarizes the current state of knowledge about mental retardation. More importantly, it also describes ways and means by |
|which better care can be provided to those with mental retardation by their families and others. |
| |
|Historical Background |
|Cases of mental retardation are found in every community, although they are referred to differently, such as, manda buddhi in India, |
|buddhi pratibondhi in Bangladesh, and manda buddika/manda manasika in Sri Lanka. Cases of mental retardation have been documented in |
|ancient medical literature and in fiction. Kashyapa Samhita, an ancient Ayurvedic treatise on childhood diseases, makes a specific |
|reference to children born with lesser intellect (buddhi), and even offers treatment to improve the condition. There is mention of |
|disabilities in Sri Lankan medical chronicles and literature. One can find many references to disabilities in Jathaka stories, dealing |
|with the life of the Buddha. Several references to weakness of the mind are found in the ‘Holy Quran’ and in a well-attested sermon of the|
|Prophet Muhammad. |
|Over the years, traditional societies in Member Countries of the South-East Asia Region (SEAR) of WHO have dealt with these people with an|
|attitude of tolerance, acceptance and resignation. They have been cared for with a sense of duty and compassion. In Sri Lanka, some |
|families even consider it a divine blessing to have been chosen by God to look after a special child. But this may not always be the case.|
|Families may consider the birth of such a child as a misfortune, a curse, or destiny which they have to live with, leading, at times, to |
|the subject being treated with neglect, rejection, segregation and abuse. |
|Many SEAR Member Countries are undergoing substantial social transition. This includes changes in community and family attitudes towards |
|mental retardation. Unlike earlier times, it may not be possible for families to care for a mentally retarded member without external and |
|professional support and help. |
| |
|A meeting was held quite far from Earth, "It's time again for another birth", said the angels to the Lord above. |
|"This special child will need much love. His progress may seem very slow, Accomplishments he may not show |
|And he will require extra care |
|From the folks he meets way down there. |
|He may not run or laugh or play; |
|His thoughts may seem quite far away; |
|In many ways he won't adapt, |
|And he will be known as handicapped, |
|So let's be careful where he's sent, |
|We want his life to be content." |
| |
|"Please, Lord, find parents who will do a special job for you. |
|They will not realize right away |
|The leading role they're asked to play. |
|But with this child sent from above |
|Comes a stronger faith and richer love. |
|And soon they'll know the privilege given |
|In caring for this gift from Heaven. |
|Their precious charge, so meek and mild is Heaven's very special Child." |
| |
|Myths And Misconceptions About Mental Retardation |
|Despite the changing perceptions, many myths and misconceptions about mental retardation persist among large sections of the population in|
|countries of the Region. |
|Myth: Mental retardation is a hereditary problem. |
|Fact: Only a few causes of mental retardation are hereditary, i.e. passed on from parents to children. Mental retardation is often caused |
|by external influences, some of which can be prevented. |
| |
|Myth: Bad deeds in the previous life of parents cause mental retardation. |
|Fact: This is completely false. Such beliefs add to the suffering of the families who are already overburdened with caring for their |
|special children. Some communities perpetuate the myth that if one tries to remedy the illness or take treatment, the suffering will be |
|repeated in one's next life. This results in added suffering to the |
|patient from lack of proper treatment. |
| |
|Myth: Mental retardation is caused by pregnant and lactating women not following restrictions on food. |
| |
|Fact: Pregnant and lactating women must maintain good nutrition for their own health and also for the health of the unborn or newly-born |
|child. There is absolutely no basis for restricting food to pregnant and lactating women. However, some medications, if taken during |
|pregnancy, may lead to malformations in the unborn child. Medication should be taken only on the prescription of a doctor. When consulting|
|a doctor for an illness, women should always inform the doctor about being pregnant. |
|Myth: Mental retardation is infectious. |
|Fact: This is completely false. Mental retardation cannot be spread by touching a patient. Children with mental retardation must be |
|cuddled and loved just as much as normal healthy children. |
|[pic] |
|Digital Creativity |
| |
| |
|Myth: Tonics/vitamins/medicines can cure mental retardation. |
|Fact: If mental retardation is caused by a treatable condition, appropriate treatment will cure it. However, there are no "brain tonics" |
|which can stimulate a damaged brain. Many unscrupulous healers and manufacturers market such substances with popular and misleading names,|
|which imply that if these substances are taken, the child will become normal. This is particularly common in rural areas, where quacks |
|market some mixtures, guaranteeing parents a cure. These substances frequently contain a substance called ‘steroids’. These medications |
|make the child plumper and perhaps happier temporarily, which makes the parents feel good. But the basic condition of mental retardation |
|is not cured. In fact, steroids are harmful if taken for long durations. |
| |
|Myth: Brain operations can cure mental retardation. |
|Fact: There are very few conditions leading to mental retardation which can be cured by surgery. |
| |
|Myth: Marriage can cure mental retardation. |
|Fact: This is completely false. In fact, a mentally retarded person should be married only with the full consent and knowledge of the |
|partner. |
| |
|Myth: Children with mental retardation become completely normal when they grow up to be adults. |
| |
|Fact: Children can make substantial progress as they grow up. However, it is unlikely that they will become completely normal. Each case |
|must be assessed individually. |
|Myth: Mentally retarded adults have poor sexual control and pose a danger to others. |
| |
|Fact: In fact, adults with mental retardation are sexually more inhibited than their normal counterparts. On the contrary, many such |
|people are victims of sexual abuse. |
| |
|Myth: Mentally retarded children are incapable of learning anything and so everything has to be done for them. |
|Fact: These children are capable of learning, although how much they learn and at what speed they learn may vary. The harder we work with |
|them, the more they will learn and more independent they can become. There is no better solution to their development than working hard |
|with them. |
| |
|Myth: Mentally retarded children should not be made to cry for any reason or should not be disciplined in any fashion. |
|Fact: All children need to be disciplined. Every effort should be made to teach children with mental retardation what is right and what is|
|wrong, recognizing their capacity for learning and taking into consideration factors beyond their control. |
| |
|Myth: Faith healers can cure mental retardation. |
|Fact: This is completely untrue. There are many sad stories about parents selling all their valuables and their land on the advice of |
|faith healers and giving this away in charity, frequently to the faith healer. Faith healers mislead the parents. There are many |
|alternative systems of medicine practised in SEAR Member Countries, some of which claim to have a ‘cure’ for mental retardation. However, |
|considerable research is still needed before their exact efficacy and safety can be established. |
| |
|Fighting against misconceptions - an example from Bangladesh |
|Mukti, a special education teacher working with disabled children in one of the centres run by the Bangladesh Protibondhi Foundation (BPF)|
|in Dhaka, was married and did not have any children for 12 long years. Finally, she conceived, but continued to work with the disabled |
|children. Her relatives, neighbours and well-wishers repeatedly requested her to discontinue her work and to avoid contact with these |
|types of children during her pregnancy, which was very precious. At times, she got confused thinking of the unborn child. But her husband |
|was very cooperative and gave her a lot of moral and emotional support and asked her not to listen to all these superstitions. Mukti was |
|blessed with a healthy daughter. The baby, named Ritu, accompanied her mother to work right from the day she joined at the end of her |
|maternity leave. Ritu, who is now 1 year and 8 months old, is a bright, pleasant child with above average intelligence. |
| |
|Normal Development Of Children |
|After birth, normal babies continue to develop physically and mentally till the age of 18 years. This is called the developmental period. |
| |
|Mental development occurs in a sequential, orderly and a predictable fashion. Normally, one would expect babies to develop certain skills |
|by certain ages. For instance, walking and learning to say a few words comes by the age of 1 year and 3 months. These are called |
|“milestones of development”. These milestones are classified in four areas: motor (control over body movements), cognitive (ability to |
|understand and deal intelligently with situations), social (interacting with people and learning |
|appropriate social behaviours) and language (understanding what others say and learning to talk). |
| |
| |
|Anyone who is familiar with babies knows that they develop and learn rapidly, especially in the first 3-4 years. They are very quick in |
|learning during these years. How do they acquire such a capacity? Growth and maturation of many organs of the body is responsible for |
|this, but most importantly, this is because of the maturation of the brain and its functions. In other words, the brain undergoes rapid |
|maturation during these early years; as a consequence, babies learn and develop fast. It should be remembered that for acquiring these |
|skills, not only maturation of the brain, but also a healthy and stimulating psychological environment is necessary. |
| |
|A healthy and stimulating psychological environment is necessary for a child's development. |
|What is Mental Retardation? |
|What happens when the brain fails to mature and grow ? |
|Naturally, such babies fail to develop and acquire milestones like normal children. These conditions, in which there is a significant |
|deficit or delay in the development of various mental functions from early childhood, are called developmental disabilities. |
|One can recognize different types of developmental disabilities, depending on what function or functions are affected and how extensive is|
|the limitation. |
|Mental Retardation: This is a condition in which there is delay or deficiency in all aspects of development, i.e. there is global and |
|noticeable deficiency in the development of motor, cognitive, social, and language functions. This is the commonest form of developmental |
|disability. In many ways, mental retardation is also representative of developmental disabilities in general, in its causation, nature, |
|and care. |
|Hashan is a four year old boy; he still can't walk independently, but can take a few steps with support. He can recognize family members, |
|but cannot show where his ear and nose are. He can babble (say ba-ba-ba) but has not learnt to say any meaningful word. He can't indicate |
|toilet needs. His parents say that he is like a one-year-old child in his mental abilities. Hashan has mental retardation. |
| |
|[pic] |
| |
|Yogeeta |
|Asha is a three-year-old child. She can speak well, sing a song, draw a picture of a cat, and eat by herself. But she cannot yet walk, and|
|moves around the house crawling. Her parents report that she was slow in holding her head up and sitting, compared to their other |
|children. Her lower limbs are stiff and cross over like scissors when she lies down. |
| |
|Asha has a spastic type of cerebral palsy affecting her lower limbs. |
| |
| |
|Cerebral Palsy: In this condition, there is gross delay in the development of motor functions. Children with cerebral palsy have great |
|difficulty in initiating and controlling their muscles and body movements. Many of these children are perfectly well in all other aspects,|
|such as in their speech, learning ability and socialization. This differentiates cerebral palsy from mental retardation. In addition, |
|their legs and arms may appear too stiff or too limp. |
|The main form of treatment of cerebral palsy is through physiotherapy and stimulation. By these methods, motor development can be enhanced|
|and complications such as contractures of muscles prevented. In a small number of children, medical and surgical methods can be used to |
|reduce the stiffness so that movements become easier. |
|Help is available… |
|Help for individuals with cerebral palsy and their families is available through spastic societies functioning in many |
|places in India. Recently, an organization devoted to cerebral palsy, called Indian Family of Cerebral Palsy, has |
|been started in Hyderabad, India. |
| |
| |
|[pic] |
|Deepashree M. Shanbhag |
|Language Developmental Disability: Some children develop well in all other aspects except speech. This happens even though their hearing |
|is normal. Many of these children are able to understand what is spoken to them, but they are slow in learning to speak. These children |
|can benefit substantially through speech therapy. The techniques of speech therapy can be learnt by parents and practised at home. A |
|majority of children with this condition grow up to be normal. |
|[pic] |
| |
|Digital Creativity |
|Nadeem is a four-year old boy. He walks and runs well. He can put on slippers, take off his underwear before passing stools, and hit a |
|ball with a bat. But he can speak only 4-5 words: abba, ammi, na-na, and dhu-dhu (for milk). However, he can understand and follow most |
|verbal instructions. For instance, when told, he can fetch his father's bag from the next room. Nadeem has expressive language |
|developmental disability. |
| |
|Did you know… |
| |
|Albert Einstein did not speak till he was fouryears old and did not read till he was seven. |
| |
|Pintu, a two-and-a-half-year old boy, spends most of his time either rocking back and forth, or continuously moving his hands in front of |
|his eyes. He often keeps repeating a meaningless phrase 'tittu' in a peculiar voice. He can see well, but does not bother to look and |
|show interest in who is around him. When called by his mother, |
|he briefly glances at her and goes back to his rocking. In spite of these problems, he can climb up a stool and take out his favourite |
|cookies from a tin kept in the kitchen. Pintu has autism. |
| |
| |
| |
|Autism: This is a rare disorder in which children fail to develop the ability to relate and interact with people. They tend to be lost in |
|their own world and remain indifferent to people around them. They have poor eye contact. They may develop some limited speech, but fail |
|to use it for communicating with others. They tend to spend most of their time repeating the same activities again and again. The main |
|form of treatment for autism is behavioural training to improve social, communicative, and self-help skills. |
|Did you know… |
|The great inventor Thomas Alva Edison, and the famous artist Leonardo da Vinci, had dyslexia? |
| |
|Dyslexia: In this condition, the level of intelligence is normal or above average; yet, such children have difficulty in doing well in |
|studies. This happens because even though the child is otherwise intelligent, he has significant disability in learning the three R's of |
|reading, writing, and arithmetic. This condition should not be confused with mental retardation, because these children retain their |
|learning ability in other areas such as language, sports, and social and artistic skills. They often get unnecessarily blamed as being |
|lazy and uninterested in studies. The problem is complicated by their tendency to avoid school work as they find it unrewarding. |
| |
|Raju, a ten-year-old boy, failed twice in class III. His mother and his teachers tried very hard to teach him the spelling of such simple |
|words as 'girl', 'forest' but he still makes mistakes. His handwriting is very poor and hardly legible. A sample of his writing is as |
|follows: |
|[pic] |
| |
|(Hen) (Dog) (Scored) (who) (have) (night) |
|While reading, he tends to guess at what is written and makes many mistakes. But he is very good in making friends, playing football and |
|running errands. Raju has dyslexia. |
| |
| |
|This condition can be corrected to some extent by specialized methods of teaching. It is also very important that children with dyslexia |
|are given full encouragement to develop their talents and skills in non-academic areas. |
|Attention Deficit Hyperactivity Disorder: All children are active, but a few are overactive and considered hyperactive. They may sleep |
|only a few hours at a time. When awake, they are impulsive, constantly in motion, darting from one activity to another, often failing to |
|sustain attention in simple tasks or |
|games. Such children often have Attention Deficit Hyperactivity Disorder (ADHD). |
| |
|ADHD affects at least 1-2% of all school-age children. ADHD is 4-8 times more common in boys than it is in girls. Undiagnosed and |
|untreated, it wreaks havoc on a youngster's sense of self-esteem and interferes with his/her ability to perform well at school, to make |
|friends, and to get along with siblings and parents. |
| |
|[pic] |
| |
|S.V. Krithika |
|Common manifestations of ADHD |
|A child can be said to have ADHD when several symptoms mentioned below are prominently seen for many months. |
|[pic] Being fidgety, restless and hyperactive most of the time; |
|[pic] Having poor concentration in activities, leaving tasks unfinished, and frequently shifting from one activity to another; |
|[pic] Impulsive behaviour such as often interrupting others, doing dangerous things like rushing into traffic, peeping into wells, |
|jumping from heights, and pulling the tail of dogs; |
|[pic] Being distracted from activities by minor events and happenings, and |
|[pic] Easy excitability, over-talkativeness, and aggressive behaviour. |
| |
| |
|A comprehensive treatment programme taking a holistic view of the individual with ADHD is needed. This requires decisions regarding |
|administering medication and behaviour therapy strategies. Often teacher training, parent training, family therapy or individual |
|counselling is needed. |
|Conduct disorders: Conduct disorder is defined as a “repetitive and persistent pattern of behaviour in which the basic rights of others or|
|major age-appropriate societal norms or rules are violated.” The group of behaviours characteristic of conduct disorder include aggressive|
|behaviour that may cause physical harm or injury to people or animals, theft, violation of rules and destruction of property. It is |
|believed that approximately 1 to 2% of children under 18, especially boys, suffer from conduct disorders in SEAR Member Countries. |
|The intensity and duration of these behavioural problems in children has significant repercussions in family, social and academic areas. |
|Conduct disorder may be associated with other mental disorders, including ADHD, depression and learning disorders. Severe psychosocial |
|factors, such as family disharmony, low socioeconomic level, harsh parenting patterns and child abuse, may also be responsible. The strong|
|influence of the media, especially television and rapid social and family system changes, could also play a role in precipitating and |
|maintaining the morbidity level of conduct disorders in children. |
|During evaluation, children with conduct disorders are typically hostile and easily provoked. A careful assessment of the family, school |
|and personal dimensions should be undertaken. Management involves a holistic approach with emphasis on behaviour modification via teachers|
|and parents. Unchecked, conduct disorders may lead to antisocial traits, substance abuse and even criminal behaviour in adulthood. |
|Prognosis may be good in cases where there is support from the family and the social network. |
|[pic] |
|Yogeeta |
|More about mental retardation |
|As noted earlier, mental retardation is a condition in which there is a significantly sub-average mental development from birth or early |
|childhood. Most people with mental retardation have the condition from birth. In a small number, the condition may occur following damage |
|to the brain in later childhood. This could, for example, follow an episode of brain fever. |
|Mental retardation is also termed as mental deficiency, mental sub-normality, and intellectual deficiency. Terms that are also used |
|include idiot, imbecile and moron. These insulting and demeaning terms should not be used. |
|Generally, mental retardation is a life-long condition. Those affected continue to have diminished intellectual capacity throughout their |
|lives. However, in most individuals with mental retardation, those parts of the brain that are not damaged continue to develop. Therefore,|
|they continue to acquire skills and abilities as they grow older, albeit slowly. |
|Mental retardation is not mental illness. The major characteristic of mental retardation is delay in mental development, whereas the major|
|characteristic of mental illness is disturbance in the mental functions of thinking, feeling, and behaviour. Mental illness can occur at |
|any age, whereas mental retardation is present from childhood. However, some people with mental retardation may also develop mental |
|illness. |
| |
|Degrees of mental retardation |
|Not all people with mental retardation have the same level of intelligence. The scientific method of measuring intelligence is through |
|standardized psychological tests called IQ tests. IQ or intelligence quotient, is the percentage of intelligence a person has, in |
|comparison to a normal person from a similar background. An IQ of 100 is considered normal intelligence. The lesser the IQ, the more |
|severe is the level of mental retardation. Based on IQ, mental retardation can be classified into different degrees as follows: |
| |
|IQ |
|Category |
| |
|85-100 |
|Normal |
| |
|70-85 |
|Normal but not retarded |
| |
|50-70 |
|Mild mental retardation |
| |
|35-50 |
|Moderate |
| |
|20-35 |
|Severe |
| |
|Below 20 |
|Profound |
| |
|[pic] |
|Digital Creativity |
|A more practical and simpler way of classifying mental retardation is to think of only two categories: mild mental retardation with an IQ |
|range of 50-70, and severe mental retardation with an IQ below 35. Though the concept of IQ is useful in some ways, it does not always |
|give the true picture of the abilities of the person. A related and more appropriate measure is the social quotient (SQ), in which |
|importance is given to the acquisition of socially relevant skills. |
|Functioning and development of people with mental retardation |
|Table 1 illustrates the attainments of people with different degrees of mental retardation in adulthood. It is clear that even those with |
|severe mental retardation can become at least partly independent in looking after themselves through proper supervision, care and |
|training. |
| |
|Table 1 |
|Adult attainments in different degrees of mental retardation |
|Degree |
|IQ range |
|Adult attainments |
| |
|Mild |
|50-70 |
| Literacy + |
| Self-help skills++ |
| Good speech ++ |
| Semi-skilled work + |
| |
|Moderate |
|35-50 |
| Literacy +/- |
| Self-help skills + |
| Domestic speech+ |
| Unskilled work with or |
| without supervision + |
| |
|Severe |
|20-35 |
| Assisted self-help skills+ |
| Minimum speech+ |
| Assisted household |
| chores + |
| |
|Profound |
|Less than 20 |
| Speech+/- |
| Self-help skills +/- |
| |
|Note: + means attainable: ++ means definitely attainable: +/- means sometimes attainable |
|[pic] |[pic] |
|Some Facts and Figures |
|Mental retardation is a common condition. In surveys in the general population in India among people of all ages, it has been found that |
|around 2% have mental retardation. In other words, in a village of 1 000 people, one can expect to find around 20 people with mental |
|retardation. But if one estimates the problem only in children, (under 18 years of age) there will be about 3% of cases with mental |
|retardation among all children under 18 years of age in the same village. Regarding learning disability, a study by UNICEF in Sri Lanka |
|revealed that 12% of primary school children had learning disability. Another report from Sri Lanka estimated that 15% of schoolgoing |
|children suffered from some form of disability. A study in children (aged 2-9 years) from Bangladesh found that around 7% had some form of|
|disability. Mental retardation, the second most common form of disability, was seen in around 2% of children. Severe mental retardation in|
|Bangladeshi children (2-9 years old) was estimated to be around 6 per 1000, in keeping with the reports from other countries. In 1999, the|
|Planning Division, Department of Mental Health of Thailand conducted an epidemiological study on mental health problems countrywide and |
|found that the rate of occurrence of mental retardation was 1.3%. |
| |
|Mild mental retardation is much more common than severe mental retardation, accounting for 65 to 75% of all cases with mental retardation.|
|Looked at in another way, in a village of 1000 people, of the 20 who will have mental retardation, about 15 will have mild mental |
|retardation and about five will have more severe forms. |
| |
|It has been found that mental retardation, especially mild mental retardation, is more common in rural areas, and in low-income groups. |
|Reasons like poor access to health facilities, under-stimulation, and under-nutrition could account for this observation. |
|[pic] | |
|What causes Mental Retardation? |
|Why does mental retardation occur? As noted earlier, anything that damages and interferes with the growth and maturation of the brain can |
|lead to mental retardation. There can be hundreds of such causes. This might happen before, during or after the birth of the child. While |
|a few examples are explained below, a more detailed list of causes is given in Table 2. |
|[pic] |
|Machi Pelha |
|Table 2: Causes of mental retardation |
|Category |
|Type |
|Examples |
| |
|Prenatal |
|(causes before birth) |
|Chromosomal disorders |
|Downs syndrome*, Fragile X syndrome, |
|Prader Wili syndrome, Klinefelters syndrome |
| |
| |
|Single gene disorders |
|Inborn errors of metabolism, such as galactosemia*, phenylketonuria*, mucopolysaccaridoses |
|Hypothyroidism*, Tay- Sachs disease Neuro-cutaneous syndromes such as tuberous sclerosis, and neurofibromatosis |
|Brain malformations such as genetic microcephaly, hydrocephalus and myelo-meningocele* |
|Other dysmorphic syndromes, such as Laurence |
|Moon Biedl syndrome |
| |
| |
|Other conditions of genetic origin |
|Rubistein Tabi syndrome De Lange syndrome |
| |
| |
|Adverse material / environmental influences |
|Deficiencies* , such as iodine deficiency and folic acid deficiency |
|Severe malnutrition* in pregnancy |
|Using substances * such as alcohol (maternal alcohol syndrome), nicotine, and cocaine during early pregnancy |
|Exposure* to other harmful chemicals such as |
|pollutants, heavy metals, abortifacients, and harmful medications such as thalidomide, phenytoin and warfarin sodium in early pregnancy |
|Maternal infections such as rubella*, syphillis*, toxoplasmosis, cytomegalovirus and HIV Others such as excessive exposure to |
|radiation*, and Rh incompatibility* |
| |
|Perinatal (around the time of birth) |
|Third trimester ( late pregnancy) |
|Complications of pregnancy* |
|Diseases* in mother such as heart and kidney |
|disease and diabetes |
|Placental dysfunction |
| |
| |
|Labour (during delivery) |
|Severe prematurity, very low birth weight, birth |
|asphyxia |
|Difficult and/or complicated delivery* |
|Birth trauma* |
| |
| |
|Neonatal (first four weeks of life) |
|Septicemia, severe jaundice*, hypoglycemia |
| |
|Postnatal (in infancy and childhood) |
| |
|Brain infections such as tuberculosis, Japanese |
|encephalitis, and bacterial meningitis |
|Head injury* |
|Chronic lead exposure* |
|Severe and prolonged malnutrition* |
|Gross understimulation* |
| |
|Note: conditions marked with an asterisk are definitely or potentially preventable. |
| |
|Some common causes of mental retardation |
| |
|Downs Syndrome: The human body is made up of billions of cells. Each cell contains 46 thread-like structures called chromosomes. In Downs|
|syndrome, because of a biological error around the time of conception, the cells come to have one extra chromosome i.e, 47 instead of 46 |
|chromosomes. The presence of an extra chromosome in the cells interferes with the normal development of the brain, leading to mental |
|retardation. Downs syndrome is a common cause of mental retardation. It is often possible to recognize people with Downs syndrome by their|
|facial appearance, characterized by up-slanting eyes and flat bridge of the nose. Downs syndrome occurs in about 1 in 800 newborn babies. |
|Even though it is a genetic disorder, Downs syndrome is most often not inherited and can occur in any child. However, it is more likely to|
|occur when the age of the mother at the time of the birth of the child is over 35 years. |
| |
|Even though persons with Downs syndrome have mental retardation, they possess good social and interactional skills. |
|Mothers older than 35 years of age may consider antenatal genetic screening for diagnosis of Downs syndrome in the unborn child. |
| |
|Inherited Metabolic Disorders: Chromosomes in the human cells contain genes which control growth and maturation of the brain. Some of |
|these are responsible for chemical (metabolic) reactions, which are essential for brain growth. If such a gene is abnormal, it can lead to|
|derangement of metabolic reactions and thereby cause mental retardation. Phenylketonuria is one such condition. Babies with |
|phenylketonuria, in addition to mental retardation, have light-coloured hair and skin, a small head, and are prone to convulsions. |
|Detection of phenylketonuria at birth and proper dietary treatment can prevent brain damage and help babies to grow normally. |
| |
|Maternal Rubella Syndrome: Rubella or German measles is generally a harmless viral infection in adults, producing symptoms of mild fever, |
|rash, and enlargement of lymph nodes. But when it occurs for the first time during early pregnancy, the virus spreads to the baby growing |
|in the mother's womb and causes extensive damage. When such a baby is born, it is likely to have mental retardation and visual impairment.|
|Maternal rubella syndrome is preventable by immunizing children with rubella vaccination (as part of MMR vaccination). |
| |
| |
|Iodine deficiency disorders are preventable by universal iodization of salt. |
| |
|Iodine Deficiency Disorder (cretinism): Iodine is essential for the normal development of unborn babies. Lack of adequate availability of |
|iodine from the mother restricts the growth of the brain of the foetus, and leads to a condition called hypothyroidism. Babies with this |
|problem have mental retardation, hearing impairment and dwarfism. In addition, they may have lethargy, coarseness of facial features, |
|rough and dry skin, feeding problems, constipation, cold extremities, and neck swelling because of enlargement of the thyroid gland. A |
|severe form of this condition, in which all the features mentioned are very pronounced, is called cretinism. |
| |
|Iodine occurs naturally in food. But in some places, the soil and the food are deficient in iodine. In such places, naturally, a pregnant |
|woman's intake of iodine is less and therefore their infants would also be deficient in iodine and manifest hypothyroidism. Iodine |
|deficiency is prevalent in large areas in some Member Countries of SEAR. |
| |
|Difficult/Complicated Delivery: Till they are born, babies receive their supply of food and oxygen from the mother. Immediately after |
|birth, babies begin to breathe on their own. Normally, this transition occurs smoothly. When, for any reason, the delivery becomes |
|difficult, prolonged, or complicated, oxygen supply to the baby is diminished. As the brain is very sensitive to oxygen deprivation, this |
|can result in brain damage. This is called birth asphyxia. Such babies may have problems in development such as mental retardation or |
|cerebral palsy. |
| |
|Brain Infection (Brain Fever): An important cause of mental retardation after birth is brain infections caused by bacteria or viruses. In |
|this condition, children who are otherwise normal, suddenly develop fever, headache, vomiting, convulsions and loss of consciousness. If |
|this infection is severe, there may be irreversible brain damage leading to mental retardation. Such children, when they recover from |
|acute illness, are noticed to have lost many skills which they had learnt earlier. Young children are more at risk for brain fever in |
|regions where Japanese encephalitis and tuberculosis are common. |
| |
|Nutrition and Mental Development: A balanced diet rich in calories, protein, vitamins and minerals is required for pregnant women and |
|young children for normal brain development. Lack of adequate diet can have direct and indirect effects on brain development and thereby |
|increase the risk of subnormal development. |
| |
|Studies have shown that birth weight is an important indicator of the future health of the baby. A baby with low birth weight is more |
|likely to have problems in mental development. The height and weight of would-be mothers and the extent of weight gain in pregnancy are |
|important factors determining birth weight. |
| |
|Proper nutrition of the girl child and good nutrition for pregnant woman can prevent many developmental problems in their babies. |
| |
| |
|[pic] |
|Yogeeta |
| |
| |
|Common health problems associated with mental retardation |
| |
|Many children and adults with mental retardation are otherwise physically and mentally healthy, except that they have lower intelligence. |
|Several others, however, frequently have other problems. The common health problems associated with mental retardation are as follows: |
| |
|Behaviour problems: Symptoms like restlessness (continuously moving around; unable to sit in one place), poor concentration, |
|impulsiveness, temper tantrums, irritability and crying are common. Other disturbing behaviour, like aggression, self-injurious behaviour |
|(such as head banging) and repetitive rocking may also be seen. When such behaviour is severe and persistent, it can become a major source|
|of stress for families. Therefore, attention should be paid to reduce such behaviour while providing treatment and care. |
| |
|Convulsions: About 25% of people with mental retardation get convulsions. Many types of convulsions can occur involving the whole body, or|
|only one half of the body, or sudden single jerks leading to a fall. Convulsions, although alarming to watch, can be easily controlled |
|with proper medication. |
| |
|Sensory impairments: Difficulties in seeing and hearing are present in about 5-10% of persons with mental retardation. Sometimes these |
|problems can be resolved by using hearing aids or glasses, or undergoing surgery for cataract. |
| |
|As noted earlier, other developmental disabilities, such as cerebral palsy, speech problems and autism, can occur along with mental |
|retardation. Persons with many disabilities, or multiple disabilities, pose a big challenge in terms of providing care. |
| |
|[pic] |
|Digital Creativity |
|[pic]Mental Health and Substance Abuse |
|Facts and Figures |
|Mental Retardation : from knowledge to action |
|[pic] |
|What Can Be Done? - Part -1 |
|Individual and family approaches |
| |
|Mental retardation is generally a life-long condition and it cannot be 'cured' with medical treatment. Given this fact, what can be done |
|and what should be the aims and objectives in providing care for these individuals? The following considerations should be kept in mind to|
|guide actions. |
| |
|Scientific evidence: Scientific research has shown that by providing the right kind of support and services, it is possible to ensure that|
|those with mental retardation can live healthy and relatively independent lives. These services comprise many areas such as health care, |
|early intervention, education, vocational training, and so on. Studies have also shown that considerable ill health, physical or |
|behavioural, in people with mental retardation are caused by lack of appropriate care and are hence preventable. |
| |
|Humanistic need: As citizens of a civilized society, it is the right of people with mental retardation to lead their lives with respect |
|and dignity. It is possible to achieve this goal by bringing about positive changes in societal awareness, attitudes and beliefs about |
|this condition. |
| |
|Family perspective: Very often, the problem of mental retardation is inseparable from the problems faced by the families. It is clear that|
|organized services are definitely needed for families to adapt well and face the situation with confidence and the least amount of stress.|
| |
|To achieve these aims, professionals from many fields, families, governmental and nongovernmental organizations, and society as a whole |
|have to work together. The following principles should help in guiding and directing the development of appropriate services: |
| |
|Normalization. This concept, which originated in the Scandinavian countries, has had a powerful influence. In simple terms, normalization |
|means ensuring that the same environmental conditions of everyday life are available to people with mental retardation as they are for |
|anybody else. It also means providing them with facilities to enable development of their full potential. |
|[pic] |
|Apurba Bhattacharya |
|Integration |
|Individuals with mental retardation should become an integral part of society; they should not be isolated, segregated or discriminated |
|against in any fashion. |
| |
|Home-based Care with Parents as Partners |
| |
|Research has shown that the best place for children with mental retardation to grow in is their own families, where they can be nurtured |
|with appropriate stimulation. Therefore, services should be organized so that the families are supported, strengthened and empowered to |
|look after their affected member. Families have different needs at different stages in the life cycle of its members (such as childhood, |
|adolescence, and adulthood); this should be recognized and attempts made to fulfil these needs. It should also be recognized that families|
|are not just recipients of services but care-providers as well. In other words, they are partners in care. |
| |
|Community-based Approaches |
|Very often, services tend to be concentrated in well-to-do urban localities. To overcome this lop-sided approach, a community orientation |
|is necessary, so that services are available to large sections of society in their own vicinity. No programme is likely to succeed without|
|community involvement and participation. |
|Services for individuals with mental retardation |
| |
|Medical and Psychological (clinical) Services |
|The first requirement is for appropriate facilities for a good medical/health evaluation and accurate diagnosis. Doctors should be in a |
|position to recognize and manage treatable disorders such as hypothyroidism. Associated problems such as convulsions, sensory impairments |
|and behaviour problems, can be corrected or controlled with proper medical attention. It is desirable to have facilities for psychological|
|assessment of strengths and weaknesses in the child which can form the basis for future training |
|There is no known medicine, herbal preparation or substance to ‘cure’mental retardation. |
| |
|Adequate parental counselling in the initial stages is essential. Doctors, nurses, psychologists and social workers can make a big |
|difference to parents by correctly explaining the condition and the options for treatment as well as by clarifying their doubts. Parental |
|counselling also involves providing emotional support and guidance, and strengthening morale. Once the parents get a grasp of the |
|condition, they need to learn appropriate ways of rearing and training the child. Parents continue to need such assistance, guidance, and |
|support as the child grows up, especially during adolescence, early adulthood and during periods of crisis. |
| |
|There are many claims that some drugs and herbal preparations can improve intelligence. But no drugs or any other treatment can completely|
|cure mental retardation. |
|It is important to ensure that parents do not spend a lot of their valuable money and time in pursuing treatments that are of doubtful or |
|no value. |
|Early Detection and Early Stimulation |
|Many well-conducted research studies have clearly shown that detecting mental retardation at an early stage, that is, in infancy, and |
|providing a loving and stimulating environment helps these children to develop better and prevents many complications. |
| |
|Some medical conditions associated with mental retardation can be detected at birth itself. It is also possible to define a group of |
|babies who are “at risk” of having a greater chance of developing mental retardation as they grow up. These are the babies born |
|prematurely, or with a low birth weight (less than 2 kg), or who have suffered birth asphyxia, or those who have had a serious illness in |
|the neonatal period. A well-recognized method for early detection is to follow the development of all the babies from birth and observe |
|whether they are lagging behind consistently. By and large, most babies with severe mental retardation can be recognized by the age of |
|6-12 months. Mild mental retardation usually becomes evident by the age of two years. Standardized methods for early detection of mental |
|retardation are now available, and can be adapted to any culture with proper modifications. Once a baby is detected or suspected to have |
|mental retardation, it is necessary to provide appropriate stimulation for appropriate development. |
|[pic] |
|Yogeeta |
|Parents should be alert... |
|[pic] Babies who are premature, or have a birth weight of less than 2 kg. Those who had a difficult neonatal period are at risk for |
|developing mental retardation; their development needs close monitoring. |
|[pic] Babies who are slow in reaching early milestones of development, such as holding up neck (normal = 3 - 4 months), social smile |
|(normal = 3-4 months), sitting without support (normal = 7-8 months), walking without support (normal = one year 3 months), saying a few |
|words (normal =1 year 6 months) and social gestures such as "Namaste" (normal =1 year 6 months). |
|[pic] Repeated convulsions in early infancy. |
|[pic] Babies who are inactive, slow to react and lethargic. |
|[pic] Children who are dependent for self-care activities such as eating, dressing and toilet control even by the age of 4-5 years. |
| |
| |
|Babies who are at risk or detected with delayed development should receive sensory-motor stimulation. These are techniques by which |
|parents encourage and teach babies to use and develop their sensory (vision, hearing and touch) and motor (grasping, reaching, |
|manipulating, and transferring) faculties. Techniques include actively engaging with the child by caressing, talking, showing bright |
|objects, playing to elicit laughter, tickling, gentle massaging, bouncing, putting the child in different positions and places, using toys|
|and play materials to arouse the child's interest, guiding the hands to manipulate things and so on. Such stimulation is necessary for |
|normal development. Children with developmental delay need it all the more, because they are prone to understimulation. |
|Many manuals and guides have been developed to carry out early stimulation, for instance, Portage Guide to Early Stimulation and Preschool|
|Intervention for Developmentally Delayed Children (published by the National Institute for the Mentally Handicapped, Secunderabad, India).|
|Some of these models have been successfully adapted to SEAR conditions. |
| |
|Early intervention: a successful venture… |
| |
|One good example of early intervention for at-risk babies is the UNICEF-funded project conducted by the Andhra Pradesh Association for the|
|Welfare of Mentally Retarded, in Hyderabad, India. All babies born in a large hospital were screened for risk factors for delayed |
|development, such as very low birth weight, birth asphyxia, birth trauma, persistent jaundice, convulsions and congenital anomalies. |
|Intervention was carried out for 410 babies who were at high risk. Most of them belonged to a socioeconomically low class. Intervention |
|was conducted at home, utilizing the “home visitor” model, along the lines of the Portage Project. During their weekly visits, the trained|
|home visitors educated the family members in child health care, provided support and guidance, taught them the skills of early |
|stimulation, and helped them to access medical services. The results at the end of three years were very positive. Only 6.8% had |
|persistent developmental delay, compared to 12% in a group of children in whom intervention was not carried out for a variety of reasons. |
| |
| |
|[pic] |
| |
|Digital Creativity |
| |
| |
|Training in Self-help, Social and Practical Skills |
| |
|Normal children learn the skills of daily living such as feeding, dressing, toilet training, and social skills such as playing, mixing, |
|and interacting with others easily, by watching others and with some adult guidance and teaching. But children with mental retardation |
|often do not learn these skills on their own. Through systematic efforts and using proper techniques, it is possible to teach and train |
|them in these skills. Behaviour modification techniques are very useful and |
|effective in teaching. These include: |
|[pic] Rewarding or positive reinforcement: Paying attention, praising the child and giving some material reward such as sweets, |
|candies or toys whenever the child shows desirable behaviour or makes an attempt to learn, increases the child's motivation to learn |
|appropriate and new behaviour. |
|[pic] Modelling: Showing the child how a particular activity is done and encouraging the child to initiate the activity is a powerful |
|method of teaching new behaviour. This is better than just orally telling or instructing the child. |
|[pic] Shaping: This means teaching the simplified version of a complex activity first and then gradually making it more and more |
|complex at a pace comfortable to the child |
|[pic] Chaining: An activity, such as dressing skills, can be broken up into several small, sequential steps. The child can be taught |
|these skills step-by-step. Very often, back-chaining or teaching the last step first and then going backwards is more effective |
|[pic] Physical guidance: If the child cannot learn by modelling, he or she can be taught the activity by holding hands and showing |
|them how the task is done. After many such repetitions, the physical guidance can be slowly withdrawn so that the child learns to do the |
|task independently. |
| |
|Modern research has clearly established the utility of these behavioural techniques in imparting many kinds of skills. |
| |
|Speech Therapy |
|Speech and language are very important and highly specialized functions for human beings. They serve the crucial purpose of communicating |
|one's own feelings and thoughts to others. Mental retardation is often accompanied by a significant limitation in the development of |
|speech and language. Research has again shown that a systematic application of speech therapy techniques is effective in promoting speech,|
|language and communication. Speech therapy is required in many children with mental retardation. |
| |
|Education |
|As they grow up and master activities of daily living, children with mental retardation need to be imparted education like other children.|
|Going to school is essential for them to learn not only academic skills but also discipline, social/interactional skills, and practical |
|skills for community living. Though they are slow in learning, experience and research has shown that by applying the right kind of |
|educational techniques, it is possible to impart the basic skills of reading, writing, and arithmetic to many with mental retardation. The|
|current approach is to educate them, as far as possible, in normal schools, rather than setting up special schools (inclusive education). |
|This especially applies to those with milder forms of mental retardation. However, more severely retarded children may benefit better in |
|educational settings meant for them (special schools). Another approach, which is interesting, is to conduct special classes only for them|
|in normal schools itself (opportunity sections). Whatever may be the approach, it is important to realize that even children with mental |
|retardation need educational experience, to ensure their optimum development and well-being. |
| |
|A positive development in SEAR Member Countries is that there is, to a large extent, informal or casual integration of children with mild |
|mental retardation in normal school settings. With some effort, it is possible to see that such children are given individual attention. |
|This can be strengthened further by teacher training and provision of resource teachers and resource rooms so that more and more children |
|with mental retardation, especially those with mild mental retardation, can enter the normal school system. This has been demonstrated in |
|many districts of India, where a scheme of Integrated Education of the Disabled has been attempted through the joint efforts of |
|governmental and nongovernmental agencies. Recently, there have been major initiatives in this direction in Bangladesh, Sri Lanka and |
|Thailand. |
|[pic] |
| |
|Digital Creativity |
|Role of special schools |
| |
|Special schools have played a pioneering role in providing organized services for the mentally retarded. They are often started by parents|
|in collaboration with other interested persons and professionals. The number of special schools is steadily increasing in SEAR Member |
|Countries. Though initially confined to urban areas, they are now extending to rural areas in recent times. Their roles are also changing;|
|they initially focused only on providing special education, but of late they have become local resource centres and are even instrumental |
|in bringing about a positive change, community awareness and healthy attitudes. Some special schools have also been engaged in the |
|extension of services beyond the school. |
| |
| |
|Vocational Training |
| |
|Is it possible for these persons, as youngsters, to learn some vocation and be employed? Studies have shown that this is indeed possible |
|for the majority. But there are many hurdles. One major hurdle is attitudinal - there is a common tendency to underestimate the |
|capabilities of these people. |
|Potential jobs can be manual, unskilled or semi-skilled, depending on the capabilities of the individual. It should be remembered that |
|such gainful occupation is not only possible but also helpful for the mental health, self-satisfaction, and social status of these |
|individuals. There are many innovative examples of how this can be achieved, e.g., villages can offer a variety of agro-based |
|opportunities for gainful employment of these people. |
| |
|When physical and attitudinal barriers are removed and facilities for learning and opportunities created for training the retarded, the |
|majority can be gainfully employed. |
| |
|[pic] | |
|Mental Health and Substance Abuse |
|Facts and Figures |
|Mental Retardation : from knowledge to action |
|[pic] |
|Mental Retardation - What Can Be Done? - Part - 2 |
|[pic] |
| |
|Deepashree M. Shanbhag |
|Adults with mental retardation can and should work. Here are some examples |
| |
|Bangladesh… |
|A 20-year-old boy with mild mental retardation was brought to the clinic from a village for problematic behaviour. He spent most of his |
|time roaming around the village and demanding things from shopkeepers. The parents tried to engage him in farm work, but failed. When told|
|to pick weeds in the field, he would also pick the crop. The boy's uncle volunteered to try to train him, after he learnt how to train the|
|boy. With a lot of patience and repeated teaching, the boy learnt to do farm work and became very good at it. He started enjoying his work|
|and became useful to the family. At the same time, his temper tantrums and demanding behaviour decreased. |
| |
|India… |
|In a unique experiment, Navjyoti Trust for vocational rehabilitation in Chennai was able to modify the learning environment to |
|successfully teach the skills of light engineering assembly to mentally retarded children. Now the Trust regularly handles such assembly |
|for many industries on contractual basis. Work of a high quality is accomplished by individuals with retardation and there is a long list |
|of small and large-scale industries who have been successfully able to utilize these individuals. Some have even made it a policy to |
|earmark a proportion of jobs for them. |
| |
|Sri Lanka… |
|The mother of a girl with Downs syndrome was very upset and worried when she came to know of the problem. She kept worrying about what the|
|child will do when she grew up. But, over the years, she noticed that the girl had a flair and talent for handling young children. Now, |
|the mother runs a crèche at home and the girl does much of the caring of children. Both she and her mother look happy and confident. |
| |
|Netherlands and USA… |
|In the Netherlands, adults with mental retardation have been engaged successfully in the manufacture of TV sets for more than three |
|decades. |
|In the USA, people with mental retardation can do some jobs better than their normal counterparts. For instance, the services of people |
|with mental retardation were utilized in assembling some parts of Apollo 11, which went to the moon. This was because their error rates |
|were lower compared to normal people. Normal people were more likely to make mistakes because of boredom, which was not the case with |
|those with mental retardation. |
| |
| |
|[pic] |
| |
|S.V. Krithika |
| |
|Residential Care |
| |
|There is no doubt that the best place for people with mental retardation to grow up in is their own family. The alternative of setting up |
|large-scale facilities, attempted by Western countries for about a century, has proved to be a big and costly blunder. |
|On the other hand, one issue that is a major source of worry for parents is the possibility that their retarded child may outlive them. |
|The question, “what will happen to my son or daughter after we are no more” keeps bothering them as they and their child grow older. The |
|support of extended families and transfer of care to the siblings, which were common practices earlier, may not be possible in the current|
|and future scenario. Also, families commonly face the problem of making temporary arrangement for care outside the family in times of |
|crisis, family functions, journeys and other situations. There are also some families in very difficult circumstances, for whom providing |
|care for their retarded member becomes impossible. Even the families who have a high commitment and who are taking good care of their |
|affected member feel the need to be relieved of the stress of care for short periods, to avoid burn-out. |
|Keeping these considerations in mind, it is necessary to establish facilities for temporary or permanent residential care for a limited |
|number of people with mental retardation. |
|In Thailand… |
| |
|The Ministry of Public Health adopted the "Health-for-All 2000" policy and implemented the primary health care strategy in 1980. Services |
|for intellectually disabled patients were then reformed. These included training programmes for general practitioners, nurses, |
|psychologists, social workers and community health officers. There was also training at general hospitals, community hospitals and health |
|centres, to educate and train staff in diagnosing mental retardation, delayed development, and in the provision of early intervention |
|services and simple rehabilitation, instead of having to receive these services only from specialized hospitals. |
|In addition, there was a training programme for village health volunteers in every village in the country so that the intellectually |
|disabled patients with obvious symptoms could be diagnosed and treated locally. The purpose of this project was to enable patients with |
|obvious symptoms to access the services from the public health centres closest to them. Village health volunteers would serve as case |
|managers, visiting the patients and making arrangements for necessary treatment. |
| |
| |
|[pic] |
| |
|Yogeeta |
|There is a well-known saying that the home is the first school for children and the mother is the first teacher. |
|This is especially true in the case of children with mental retardation. |
| |
| |
|What the family can do |
|There are three aspects concerning the families of persons with mental retardation. The first is the stress they face and how they adapt |
|to the problem. The second is the training of parents as co-therapists and the third is the importance of establishing organizations of |
|parents of mentally retarded children. |
|Family Stress and Adaptation |
|Families face a lot of stress and difficulties while caring for family members with mental retardation. They encounter different problems |
|at different stages. Stress may take many forms - demands of daily care, lack of leisure time, emotional disturbances such as worries, |
|frustrations, sadness, irritability, and relationship problems between family members. In addition, there is stigmatization, social |
|embarrassment, and financial implications. |
|However, families are not always passive sufferers. They make efforts to overcome the difficulties and try to cope and adjust to the |
|situation. They try to solicit support and advice from relatives, friends, religious persons, and professionals. |
|In this process of adjustment, certain things help the families to cope and adapt well. Families need to gather the right kind of |
|information about the condition and become knowledgeable about it. At some stage, they have to accept the mental retardation in a family |
|member - they should also understand that these family members will continue to develop, even though at a slower pace, and that home-based|
|training can enhance such development. |
|It is also very important for families to preserve their own health, maintain family cohesion and harmonious relations. They should try as|
|much as possible to continue with their normal life. They should not cut off their relationships and contacts with friends and relatives |
|out of a sense of shame or embarrassment. The burden of care should not fall only on the mother; other family members should also share in|
|the caring. Families have a greater chance of succeeding in solving the problems when they work with a sense of togetherness. |
|Families can sometimes bring about big changes in the society. One good example was US President John F Kennedy, who had a sister with |
|mental retardation. He was responsible for radical changes in the provision of services for individuals with mental retardation in USA. |
|Families have the responsibility to provide good care, affection and training to these individuals, but, at the same time, it is not |
|necessary that they sacrifice everything for the sake of the child. |
|Even people with mental retardation can give and receive affection like others. A happy family is one that recognizes this fact and takes |
|pleasure in even their small achievements. |
|Some Do's and Don'ts for parents… Seek information and clarify your doubts from reliable sources. |
|[pic] Look at abilities rather than disabilities in the child. |
|[pic] Notice successes and praise them, however small these may be. |
|[pic] Try to learn the techniques of training and practise them. |
|[pic] Remember that those with mental retardation are slow in learning but they can still be taught with patience, persistence, and |
|the correct approach. |
|[pic] Find out about services that are available and utilize them. |
|[pic] There is no need to feel ashamed about having a retarded child. |
|[pic] There is no need to blame oneself or other family members for the child's condition. |
|[pic] Do not overprotect the child; as far as possible encourage them to stand on their own feet. |
|[pic] Do not waste money unnecessarily on dubious treatments, which have not been proven. |
|[pic] Contact other parents for mutual support. |
| |
| |
|[pic] |
| |
|Digital Creativity |
| |
|Parent Training |
|Initially, the techniques of training individuals with mental retardation were developed for professionals. Later, attempts to teach these|
|skills to workers with minimal expertise were made and found to be feasible. Still later, it was realized that parents themselves could be|
|taught the techniques. Also, professionals realized that parents came up with ideas and techniques that they had never thought of! A |
|family, in this way, is a co-therapist and a partner in care. |
| |
|Many programmes have been developed for imparting these skills to parents. Several centres in some SEAR Member Countries now hold regular |
|workshops for group training of parents. Some centres in India have evolved an innovative approach of short-term residential |
|family-focused intervention, especially for those with severe and multiple disabilities. A variety of educational and training materials |
|are also available, notably, from the National Institute for the Mentally Handicapped, Secunderabad (India). |
| |
|Parent Organizations |
|Perhaps the best persons who can understand the plight of parents with a mentally retarded child are other parents who have gone through |
|similar experiences. When many such parents come together, they can work as a group for many tangible benefits for themselves as well as |
|their children. This has, in fact, happened all over the world in the last 3-4 decades. These parent organizations have also been referred|
|to as self-help groups. The main function of these groups is to meet other parents and realize that they are not alone, besides collecting|
|and disseminating information, providing support for 'new' parents, supporting and learning from each other on how to face situations and |
|solve problems, and working towards organizing better services in their locality. They can also function as pressure groups to get their |
|share of resources from the government and even bring about policy changes. |
| |
|Utility of parents/groups - a mother's perspective… |
|The mother of a 15-year-old boy attending a self-help group for some time reported, “I always thought that it is my fate that I should |
|silently suffer because of the problems created by my son. I would feel very helpless and tired but somehow used to carry on. But things |
|have changed now. I see others facing similar problems and feel that I am not alone. I feel relieved when I talk about my problems freely |
|in the group. I have also learnt how to tackle the problems better and feel more confident about the future”. |
| |
| |
|Parental self-help group movement in India: a big step forward… |
|In the 1970s, there were very few parents organizations in India. In 1980, WHO conducted several workshops to promote this idea. This |
|provided the motivation for many parents, professionals, and nongovernmental organizations to form self-help groups in their own |
|localities. The idea caught on over the years. The National Institute for the Mentally Handicapped, Secunderabad, recognized the |
|importance of this approach and provided technical and organizational support. A national federation of parents associations (named |
|Parivar) was formed in 1994 and annual meetings were held. Currently, these associations have a high visibility and a big say in matters |
|concerning legislation and policy development at the national level. |
| |
| |
|What the community can do |
|What does the common man know about mental retardation? How does he respond when he comes across persons with mental retardation? Does he |
|look down upon them, ridicule them or think of them as a public nuisance or view them with fear? Or does he try to understand the problem |
|and do whatever he can to help them? How comfortable do families feel when they have to take the affected member out of the house? |
|Obviously, answers to these questions make a major difference for individuals with mental retardation and their families. |
| |
|Put in another way, the quality of life of individuals with mental retardation and their families depends a lot on the awareness, |
|attitudes, and beliefs of the community. Also, the society as a whole has the responsibility to ensure that the rights of people are |
|protected and facilities for care are provided. It follows that actions are required at the community and social levels to achieve these |
|goals. This is all the more necessary for individuals with mental retardation, as they cannot speak for themselves. |
| |
|Social stigma of mental retardation and its reduction… |
|[pic] Both individuals with mental retardation and their families have to frequently face scorn, ridicule, fear and rejection. Such a|
|stigma arises because of the lack of awareness and the prevalence of many myths and misconceptions about mental retardation. These |
|stigmatizing influences make life miserable for the individuals and their families and add to their difficulties. |
|[pic] The best way to reduce and eliminate stigma is by raising awareness in the community and by dispelling the myths and |
|misconceptions. This has to be done by a combined effort of families, community leaders, governmental and nongovernmental organizations. |
|Activities such as public education materials, street plays, public rallies, and programmes utilizing the mass media are some examples to |
|achieve this goal. |
|[pic] At the micro-level, families have to learn to cope with their own fears about stigmatization and keep their social life intact.|
| |
| |
|There are other reasons also to initiate actions at the community level. For instance, the existing health care and educational systems |
|may not be responsive, sensitive, and concerned enough to handle the issues surrounding mental retardation. Whatever facilities are |
|available may be difficult to access. |
| |
|All these considerations have propelled concerned people to develop community-based rehabilitation services for disabilities in general |
|and mental retardation in particular. There have been many successful experiments and innovations in SEAR Member Countries in the last two|
|decades. Notably, nongovernmental organizations have taken the lead in this area. |
| |
|The aims and objectives of community-based rehabilitation programmes are : |
| |
|[pic] to increase the awareness of the community and to sensitize it to issues and bring about a positive attitudinal change; |
|[pic] to facilitate bringing patients and their families into the mainstream; |
|[pic] to mobilize community resources and enhance community participation in building the required services; |
|[pic] to establish accessible, available and affordable services for the majority of people within the community itself; |
|[pic] to ensure that these people and their families have a say in how the services are run, and |
|[pic] to promote ownership of the programmes by the community itself so that they continue even without external aid or support. |
| |
|[pic] |
|Yogeeta |
|[pic] |[pic] |
Policy and Legislation
Governments have the responsibility to provide optimum services to adequately address the problem of mental retardation. This includes strengthening and effective utilization of existing services in the health, education and welfare sectors; creating new infrastructure where necessary, and encouraging and promoting activities in the NGO sector by building partnerships with them.
The intent and commitment of governments to allocate resources and develop services in the area of mental retardation needs to be expressed in the form of policy statements and enactment of legislation at the national level. Several steps have been taken in this direction recently in Member Countries of the Region.
|In India, the National Policy for Mentally Handicapped was formulated in 1988, which gave an impetus to the development of |
|Persons with Disabilities Act. Coming into force in 1995, this Act envisages mandatory support for the prevention, early |
|detection, education, employment and other facilities and social security benefits for the welfare of persons with |
|disabilities in general and mental retardation in particular. In addition, this Act provides for affirmative action and |
|non-discrimination of persons with disabilities. In keeping with this Act, several states in India have begun providing many |
|social security measures like disability pension, family pension, scholarships for special education, travel concession, |
|income tax relief and special insurance policies. Another positive development in India is the promulgation of the National |
|Trust Act in 1999. The spirit behind this Act is to actively involve the parents of mentally challenged persons and voluntary|
|organizations in setting up and running a variety of services and facilities with governmental funding. It is hoped that the |
|implementation of this Act will be the answer to an important concern of parents, viz., “what will happen to our child after |
|we are no more”. |
Setting up an apex institution at the national level would be another important governmental investment to address the needs of the mentally retarded segment of the population.
|National Institute for the Mentally Handicapped (NIMH), a national asset in India… |
|NIMH was established as an apex body in the field of mental retardation by the Government of India in 1984 at Secunderabad |
|in Andhra Pradesh. The main objectives were to develop human resources, models of care and rehabilitation, and to undertake |
|research, documentation, and information in the field of mental retardation. Since its inception, NIMH has grown by leaps |
|and bounds, with many achievements to its credit and a visible impact on the national scene. Its major contributions have |
|been manpower development, numerous and very popular publications on early stimulation, education, training, and |
|rehabilitation. The Institute has been able to develop innovative models of family and community-based care that have |
|undergone research evaluation, and has functioned as a clearing house of information at the national level. Recently, it has|
|been instrumental in promoting and supporting the parental self-help group movement in India. Other notable activities |
|include an annual national seminar on mental retardation, an annual meet of parent organizations, Special Olympics, |
|awareness campaigns and a national meet of special employees. The Institute has many regional centres all over India, mainly|
|to run training courses for manpower development. |
|Preventive Strategies |
|Primary prevention refers to a set of approaches that reduce or eliminate the risk of mental retardation in the community. As mentioned |
|earlier, these concern promoting the health status of the community as a whole and affording specific protection against certain |
|conditions. Knowledge of the causes of mental retardation can help to reduce cases by at least 25% by practising primary prevention. |
| |
|There are many methods of primary prevention. Some of these are simple, whereas others are more complicated. |
|Simple methods |
| |
|These apply to large segments of the population and basically mean implementation of certain practical and effective interventions at the |
|community level. A large number of these practices concern maternal and child health care. Some of the important steps are: |
| |
|[pic] Improving the nutritional status of the community as a whole, especially the girl child in order to reduce the risk factors for |
|mental retardation such as low birth weight, and prematurity in the offspring of these children in future; |
|[pic] Universal iodization of salt to prevent iodine deficiency disorders which are endemic in some parts of SEAR Member Countries; |
|[pic] Administration of folic acid tablets to reduce the occurrence of neural tube defects; |
|[pic] Nutritional supplementation during pregnancy, focusing on intake of calories and iron; |
|[pic] Universal immunization of children with BCG, polio, DPT, and MMR to prevent many disorders having the propensity to damage the |
|brain and thereby causing mental retardation. Rubella immunization (part of MMR) can totally eradicate the occurrence of maternal rubella |
|syndrome; |
|[pic] Avoiding pregnancy before 21 years and after the age of 35 years as complications of pregnancy and labour are more common before|
|21 years. The risk of Downs syndrome and other chromosomal disorders increases as the maternal age at pregnancy crosses 35 years; |
|[pic] Spacing pregnancies to help the mother to nutritionally replenish herself before the next pregnancy; |
|[pic] Avoiding exposure to harmful chemicals and substances including alcohol, nicotine and cocaine during pregnancy, especially early|
|pregnancy. Failed abortions are caused by chemicals often administered by quacks, using harmful medicines. All pregnant women should |
|inform their doctors about their pregnancy status; |
|[pic] Detection and care for high-risk pregnancies; |
|[pic] Screening pregnant women for infections such as syphilis and promptly treating it; |
|[pic] Preventing Rh iso-immunization, a situation that can arise when the mother has Rh negative blood group. The damage to the foetus|
|can be prevented by administration of a medicine called Anti-D immunoglobulin immediately after the first delivery; |
|[pic] Prompt treatment for severe diarrhoea and brain infections during childhood to reduce the chance and extent of brain damage; |
|[pic] Providing an enriching and stimulating environment for children from infancy to ensure proper intellectual development; |
|[pic] Chronic low-grade exposure to lead can impair brain development; steps should be taken to reduce the sources of environmental |
|pollutants (such as using unleaded petrol), and |
|[pic] Health education about the nature, causes and prevention of mental retardation, especially during the formative years, can lead |
|to healthy practices during pregnancy and child-rearing. |
| |
|[pic] |
| |
|Digital Creativity |
|Advanced methods |
| |
|These are technology-intensive and generally more expensive than primary prevention measures. From a public health viewpoint, they are of |
|lesser importance in reducing the occurrence of mental retardation compared to the simple measures listed above. These include |
|[pic] Prenatal diagnosis/screening: Advances in modern medicine have made it possible to detect the presence of certain structural and|
|functional abnormalities in the growing embryo in early pregnancy. The pregnancy could be aborted if the embryo is found to have a serious|
|abnormality. Some of these procedures are relatively safe, inexpensive, and widely available. For instance, ultra-sonogram in early |
|pregnancy can detect the presence of severe malformations of the brain and other organs. But other methods involving genetic testing by |
|amniocentesis (removing some fluid from the uterus of the mother) or chorionic villus biopsy (taking a small piece from the placenta of |
|the mother) are expensive, technically complex, and not widely available and have their own risks. One should also remember that there are|
|many unresolved ethical issues in applying these techniques |
|[pic] Neonatal screening: There are some causes of mental retardation for which definite treatment is available in the form of |
|medicines or special diets. Some examples are phenylketonuria, galactosemia, and hypothyroidism. Tests are available to detect these |
|conditions at birth itself. If these conditions are detected at birth and treatment is started immediately, the occurrence of mental |
|retardation and other problems can be prevented. Testing all newborn babies has become a standard practice in many western countries. |
|However, widespread use of neonatal screening in SEAR Member Countries may not be currently possible because of limitations in the |
|prevailing health care system. |
|[pic] Neonatal intensive care: Brain damage in very sick newborn babies can sometimes be prevented by providing highly specialized and|
|technology-intensive care in the neonatal intensive care units. These are very expensive to set up and the cost of care is also very high.|
|From a public health point of view, the impact of these services on the prevalence of mental retardation may be small. |
|[pic] Genetic counselling: Prospective parents, especially couples who already have a child with mental retardation are keen to know |
|the risk of their next child being affected. Professional advice to such parents may help them make informed decisions about having the |
|next child. Such genetic counselling could be as simple as telling parents who have a child with mental retardation caused by brain |
|infection that the risk for their next child is very low. Or it could be a very complicated matter needing several costly investigations |
|when a genetic cause is suspected. |
| |
|Recently, there have been rapid advances in the field of genetics. A new set of techniques for the detection of genetic and other |
|disorders called molecular genetics has evolved in the last decade. Though costly, the techniques are likely to become inexpensive and |
|become applicable for wider use in future. One example is the possibility of detecting the presence of Downs syndrome by doing a blood |
|test on the mother during early pregnancy. Such tests perhaps would become common in future. |
|Levels of prevention |
|This is an important approach developed by WHO, visualizing prevention at many levels. From this viewpoint, all services, including early |
|intervention can be considered as preventive measures. The levels include health promotion, specific protection, early detection and |
|intervention, disability limitation, and rehabilitation. Table 3 shows an overview of how these levels are applicable in the area of |
|mental retardation. |
| |
|[pic] |
|Yogeeta |
|Table 3: Levels of prevention |
|Level |
|Approach |
|Interventions |
| |
|Primary Prevention (preventing the occurrence retardation) |
|Health promotion |
|Health education, especially for adolescent girls |
| |
| |
| |
|Improvement of nutritional status in community Optimum health care facilities |
| |
| |
| |
|Improvements in pre, peri and postnatal care |
| |
| |
|Specific protection |
|Universal iodization of salt |
| |
| |
| |
|Rubella immunization for women before pregnancy |
| |
| |
| |
|Folic acid administration in early pregnancy |
| |
| |
| |
|Genetic counselling |
| |
| |
| |
|Prenatal screening for congenital malformation and genetic disorders |
| |
| |
| |
|Detection and care for high-risk pregnancies |
| |
| |
| |
|Prevention of damage because of Rh incompatibility |
| |
| |
| |
|Universal immunization for children |
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|Se condary Prevention (halting disease progression) |
|Early diagnosis and treatment |
|Neonatal screening for treatable disorders |
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|Intervention with “at risk” babies |
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|Early detection and intervention of developmental delay |
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|Tertiary Prevention (preventing complications and maximization of functions) |
|Disability limitation and rehabilitation |
|Stimulation, training and education, and vocationalopportunities |
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|Mainstreaming / integration |
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|Support for families |
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|Parental self-help groups |
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|Primary prevention strategies remain the optimum solutions in SEAR Member Countries. Not only are these effective, there is no ‘cure’ for |
|most cases of mental retardation, and knowledge and facilities for secondary and tertiary prevention are limited. |
|[pic] |
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|[pic] | |
|Some Facts and Figures |
|Mental retardation is a common condition. In surveys in the general population in India among people of all ages, it has been found that |
|around 2% have mental retardation. In other words, in a village of 1 000 people, one can expect to find around 20 people with mental |
|retardation. But if one estimates the problem only in children, (under 18 years of age) there will be about 3% of cases with mental |
|retardation among all children under 18 years of age in the same village. Regarding learning disability, a study by UNICEF in Sri Lanka |
|revealed that 12% of primary school children had learning disability. Another report from Sri Lanka estimated that 15% of schoolgoing |
|children suffered from some form of disability. A study in children (aged 2-9 years) from Bangladesh found that around 7% had some form of|
|disability. Mental retardation, the second most common form of disability, was seen in around 2% of children. Severe mental retardation in|
|Bangladeshi children (2-9 years old) was estimated to be around 6 per 1000, in keeping with the reports from other countries. In 1999, the|
|Planning Division, Department of Mental Health of Thailand conducted an epidemiological study on mental health problems countrywide and |
|found that the rate of occurrence of mental retardation was 1.3%. |
| |
|Mild mental retardation is much more common than severe mental retardation, accounting for 65 to 75% of all cases with mental retardation.|
|Looked at in another way, in a village of 1000 people, of the 20 who will have mental retardation, about 15 will have mild mental |
|retardation and about five will have more severe forms. |
| |
|It has been found that mental retardation, especially mild mental retardation, is more common in rural areas, and in low-income groups. |
|Reasons like poor access to health facilities, under-stimulation, and under-nutrition could account for this observation.—ref : WHO site |
| |
|Conduct diso: |
|Conduct Disorder (CD) |
|Symptoms or Behaviors |
|About the Disorder |
|Educational Implications |
|Instructional Strategies & Classroom Accommodations |
| |
| |
|• Bullying or threatening classmates and others |
|• Poor attendance record or chronic truancy |
|• History of frequent suspension |
|• Little empathy for others and a lack of appropriate feelings of guilt and remorse |
|• Low self-esteem masked by bravado |
|• Lying to peers or teachers |
|• Stealing from peers at school |
|• Frequent physical fights; use of a weapon |
|• Destruction of property |
| |
|Youth with conduct disorder are highly visible, demonstrating a complicated group of behavioral and emotional problems. Serious, |
|repetitive, and persistent misbehavior is the essential feature. These behaviors fall into 4 main groups: |
|1. aggressive behavior toward people or animals |
|2. destruction of property |
|3. deceitfulness/theft |
|4. serious violations of rules. |
|To receive a diagnosis, the youth must have displayed 3 or more characteristic behaviors in the past 12 months. At least 1 must have been |
|evident during the part 6 months. Diagnosing can be a dilemma because youth are constantly changing. Many children with CD also have |
|learning disabilities and about 1/3 are depressed. Many stop exhibiting the behavior problems when treated for depression. |
|USDHHS estimate between 6 and 16% of males and 2 to 9% of females under 18 have CD that ranges in severity from mild to severe. |
|Other disorders associated with CD are AD/HD or oppositional defiant (ODD). The majority of youth with CD may have life-long patterns of |
|anti-social behavior and are at higher risk for mood or anxiety disorder. But for many, the disorder may subside in later adulthood. |
|Social context (poverty, high crime) may influence what we view as anti-social behavior. In these cases, CD may be misapplied to |
|individuals whose behaviors may be protective or exist within cultural context. A child with suspected CD needs to be referred for |
|assessment. If symptoms are mild, the child may receive services and remain in the school environment. More seriously troubled youth, |
|however, may need more specialized educational environments. |
| |
|Students with CD like to engage in power struggles. They often react badly to direct demands or statements such as: ”You need to…” or “You|
|must…” They may consistently challenge class rules, refuse to do assignments, and argue or fight with other students. This behavior can |
|cause significant impairment in both social and academic functioning. They also work best in environments with high staff/student ratios, |
|1-1 situations, or self-contained programs when there is plenty of structure and clearly defined guidelines. Their frequent absences and |
|their refusal to do assignments often leads to academic failure. |
| |
|• Make sure curriculum is at an appropriate level. Frustration sets in easily if too hard; boredom if it is too easy. Both will lead to |
|problems in the classroom. |
|• Avoid “infantile” materials to teach basic skills. Materials should be age appropriate, positive, and relevant to problems in the |
|classroom. |
|• Consider using technology. Computers with active program tend to work well with CD. |
|• Students with CD tend to work well in programs that allow them to work outside the school setting. |
|• Be aware that adults can unconsciously form and behaviorally express negative impressions of low-performing, uncooperative students. Try|
|to monitor your impressions, keep them neutral as possible, communicate a positive regard for students, and give them the benefit of the |
|doubt whenever possible. |
|• Youth with CD like m to argue. Maintain calm, respect, and detachment. Avoid power struggles and arguments. |
|• Give students options. Stay away from direct demands or statements such as: “You need to…” or “you must.” |
|• Avoid escalating prompts such as shouting, touching, nagging, or cornering a student. |
|• Establish clear and consistent rules. Rules should be few, fair, clear, displayed, taught and consistently enforced. Be clear about what|
|is non-negotiable. |
|• Have your students participate in the establishment of rules, routines, schedules, and expectations. |
|• Teach social skills such as anger management, conflict resolution skills and appropriate assertiveness. |
| |
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| |
|1 Minnesota Association for Children’s Mental Health, St. Paul Minnesota, . |
|[pic] |
|Fact Sheet for the Classroom - Pervasive Developmental Disorders (PDD) |
|Top |
|Pervasive Developmental Disorders (PDD) (Also referred to as Autism) |
|PDD, the acronym for pervasive developmental disorders, includes Rett’s Syndrome, childhood disintegrative disorder, and Asperger’s |
|Syndrome. Pervasive developmental disorder not otherwise specified (PDD-NOS) also belongs to this category. |
| Autistic disorder belongs to the category of disorders known as PDD. According to the USDHHS, 1 in 1,000 to 1 in 1,500 have autism or a |
|related condition. Autism appears in the first 3 years of life and is 4 times more prevalent in boys than girls. It occurs in all racial, |
|ethnic, and social groups. Autism is a neurologically based developmental disorder; its symptoms range from mild to severe and generally |
|last throughout a person’s life. The disorder is defined by a certain set of behaviors, but because a child can exhibit any combination of|
|the behaviors in any degree of severity, no 2 children with autism will act the same. |
| The terminology can be confusing because over the years autism has been used as an umbrella term for all forms of PDD. This means, for |
|example, that a student with Asperger’s may be described as having a mild form of autism, or a student with PDD-NOS may be said to have |
|autistic- like tendencies. Nationally, these are all known as autism spectrum disorders. |
| Although the American Psychiatric Association classifies all forms of PDD as “mental illness,” these conditions often affect children in|
|much the same way a developmental disability would. Some states recognize autism and Rett’s as developmental disabilities (DD), which |
|means that children with these conditions are eligible for case management and other DD services. Children with Asperger’s, childhood |
|disintegrative disorder, or PDD-NOS may or may not be eligible- depending on the specific state law. |
| Diagnosis of autism and other forms of PDD is based on observation of a child’s behavior, communication, and developmental level. |
|According to the Autism Society of America, development may appear normal in some children until age 24-30 months; in others, development |
|is more unusual from early infancy. Delays may be seen in the following areas: |
|Communication: Language develops slowly or not at all. Children use gestures instead of words or use words inappropriately. Parents may |
|also notice a short attention span. |
|Social Interaction: Children prefer to be alone and show little interest in making friends. They are less responsive to social cues such |
|as eye contact. |
|Sensory Impairment: Children may be overly sensitive or under-responsive to touch, pain, sight, smell, hearing, or taste and show unusual |
|reactions to these physical sensations. |
|Play: Children do not create pretend games, initiate others, or engage in spontaneous or imaginative play. |
|Behavior: Children may exhibit repetitious such as rocking back and forth or head banging. They may be very passive or overactive; lack of|
|common sense and upsets over small changes in the environment or daily routine are common. Some children are aggressive and |
|self-injurious. Some are severely delayed in areas such as understanding personal safety. |
| A child who is suspected to have autistic disorder should be evaluated by a multidisciplinary team. This team may be comprised of a |
|neurologist, psychiatrist, developmental pediatrician, speech/language therapist, and learning specialist familiar with autism spectrum |
|disorders. |
| Early intervention is important because the brain is more easily influenced in early childhood. Children with autism respond well to |
|highly structured, specialized education and behavior modification programs tailored to their individual needs. Schools need to seek the |
|assistance of trained professionals in developing a curriculum that will meet the child’s specific needs. Good collaboration and |
|communication between school personnel and parents is very important and can lead to increased success. |
| |
| |
| |
|Children’s Mental Health Disorder Fact Sheet for the Classroom1 |
|Pervasive Developmental Disorders (PDD) |
|Symptoms or Behaviors |
|About the Disorder |
|Educational Implications |
|Instructional Strategies & Classroom Accommodations |
| |
| |
|• Repetitive, nonproductive movement like rocking in one position or walking around the room |
|• Training a hand across surfaces such as chairs, walls, or fences as the student passes |
|• Great resistance to interruptions of such |
|movements • Sensitive or over- |
|reactive to touch May rarely speak, repeathe same phrases over and over, or repis said to the |
|(echolalia) |
|• Avoids eye |
|PDD, the acronym for pervasive developmental disorders, includes Rett’s Syndrome, childhood disintegrative disorder, and Asperger’s |
|Syndrome. Pervasive developmental disorder not otherwise specified (PDD-NOS) also belongs to this category. |
|Autistic disorder belongs to the category of disorders known as PDD. According to the USDHHS, 1 in 1,000 to 1 in 1,500 have autism or a |
|related condition. Autism appears in the first 3 years of life and is 4 times more prevalent in boys than girls. It occurs in all racial, |
|ethnic, and social groups. Autism is a neurologically based developmental disorder; its symptoms range from mild to severe and generally |
|last throughout a person’s life. The disorder is defined by a certain set of behaviors, but because a child can exhibit any combination of|
|the behaviors in any degree of severity, no 2 children with autism will act the same. |
|The terminology can be confusing because over the years autism has been used as an umbrella term for all forms of PDD. This means, for |
|example, that a student with Asperger’s may be described as having a mild form of autism, or a student with PDD-NOS may be said to have |
|autistic- like tendencies. Nationally, these are all known as autism spectrum disorders. |
|Although the American Psychiatric Association classifies all forms of PDD as “mental illness,” these conditions often affect children in |
|much the same way a developmental disability would. Some states recognize autism and Rett’s as developmental disabilities (DD), which |
|means that children with these conditions are eligible for |
| |
|Each child’s behavior is unique. Parents and professionals who are familiar with the student are the best source of information. In |
|general, children with autism usually appear to be in their own world and seem oblivious to classroom materials, people, or events. But a |
|child’s attention to you or the material you are presenting may be quite high, despite appearances. Teaching must be direct and |
|personalized in all areas. This includes social skills, communication, and academic subject matter as well as routines like standing in |
|line. Patience, firmness, consistency, and refusing to take behaviors personally are the keys to success. |
|• Use a team approach to curriculum development and classroom adaptations. Occupational therapists and speech/language pathologists can be|
|of enormous help, and evaluations for assistive/augmentative technology should be done early and often. |
|• To teach basic skills, use materials that are age-appropriate, positive, and relevant to student’s lives. |
|• Maintain a consistent classroom routine. Objects, pictures, or words can be used as appropriate to make sequences clear and help |
|students |
|learn independence. • Avoid long strings of verbal instruction. Use written checklists, picture charts, or object schedules instead. If |
|necessary, give instructions |
|a step at a time. Minimize visual and auditory distractions. Modify the environto meet the student’s sensory integration needs; some |
|stimuli mayactually be painful to a student. An occupational therapist can helpidentify sensory problems and |
|suggest needed modifications. Help students develop functional learning skills through direct teaching.For example, teach them to |
|to right and top to bottom. Help students develop social skills and play skills through direct teaching.For example, teach them to |
|understand social language, feelingswords, facia |
|l expressions and body language. Many children with autism are good at drawing, art, and computer programm |
| |
|ing. Encourage these areas of talent. Students who get fixated on a subjecan be motivated by having “their” topic be the content for |
|lessons of |
|reading, science, math, and other subjects. If the student avoids eye contact or looking directly at a lesson, allow them to use |
|peripheral vision to avoid |
| |
| |
|1 Minnesota Association for Children’s Mental Health, St. Paul Minnesota, . |
|Children’s Mental Health Disorder Fact Sheet for the Classroom1 | Pervasive Developmental Disorders (PDD) 2 Symptoms or Behaviors About |
|the Disorder Educational Implications Instructional Strategies & Classroom Accommodations |
|case management and other DD services. Children with Asperger’s, childhood disintegrative disorder, or PDD-NOS may or may not be eligible-|
|depending on the specific state law. |
|Diagnosis of autism and other forms of PDD is based on observation of a child’s behavior, communication, and developmental level. |
|According to the Autism Society of America, development may appear normal in some children until age 24-30 months; in others, development |
|is more unusual from early infancy. Delays may be seen in the following areas: |
| |
|of a speaker rather than the eynecessary. Some autistic children do not understand that words are used to communicate with someone wha |
|“separate” brain. Respond to the words that are said and teach techniques for repairing “broken” communication. Consult your schspeech |
|language |
|information about your student’s communication. Help students learn to apply their learning in different situations through close coo |
|other professionals who work with the student. |
| |
|play. Behavior: Children may exhibit repetitious such asrocking back and forth or head banging. They may bevery passive or overactive; |
|lack of common sense and upsets over small changethe environment or daily routine are common. Some children are aggressive |
|aself-injurious. Some are severely delayed in areasuch as understa |
| |
|ources: |
|Re• Autism Research Institute: ari |
|• |
| |
|• Communication: Language develops slowly or not at all. Children use gestures instead of words or use words inappropriately. Parents may |
|also notice a short attention span. |
|• Social Interaction: Children prefer to be alone and show little interest in making friends. They are less responsive to social cues such|
|as eye contact. |
|• Sensory Impairment: Children may be overly sensitive or under-responsive to touch, pain, sight, smell, hearing, or taste and show |
|unusual reactions to these |
|physical sensations. • Play: Children do not create pretend games, initiate others, or engage in spontaneous or imaginative |
Children’s Mental Health Disorder Fact Sheet for the Classroom1 | Pervasive Developmental Disorders (PDD) 3 Symptoms or Behaviors About the Disorder Educational Implications Instructional Strategies & Classroom Accommodations personal safety. linary st autism spectrum diso t ly l ialized ing n d can ad to increased success. sed only as ds of ay encounter in the assroom.
| |
|A child who is suspected to have autistic disorder should be evaluated by a multidiscipteam. |
|This team may be comprised of a neurologist, psychiatrist, developmental pediatrician, |
|speech/language therapist, and learning specialifamiliar with |
|rders. Early intervention is importanbecause the brain is more easiinfluenced in early |
|childhood. Children with autism respond welto highly structured, speceducation and behavior |
|modification programs tailored totheir individual needs. Schools need to seek the assistance |
|of trained professionals in developa curriculum that will meet thechild’s specific needs. Good|
|collaboration and communicatiobetween school personnel and parents is very important an |
|le |
|This fact sheet must not be ufor the purpose of making a diagnosis. It is to be used a |
|reference for your own understanding and to provide information about different kinbehaviors |
|and mental health issues you m |
|cl |
| | |
|Kumaran (left) and Julee (right) are learning building skills. |
RURAL EDUCATION & ACTION DEVELOPMENT
(READ)
ANBAGAM
Home for mentally retarded children
| | |
|(left) From left to right: Julee, Kumaran, Vijiraja and Devakrishnan, the first students of Anbagam, a special school where these needy |
|children receive education and skill training (right). |
[pic][pic][pic][pic][pic]
|[pic] |Identifying Attention Deficit Hyperactivity Disorders |
|Home Page | |
[pic]
Related Articles:
Health & Safety Links
Identifying Behavioral Disorders
Dr. Robert F. Reynolds - Biography
Attention-Deficit Hyperactivity Disorder (ADHD) is characterized by developmentally inappropriate impulsivity, attention, and in some cases, hyperactivity.
[pic]ADHD is a neurobiological disability that affects three-to-five percent of school-age children and approximately two-to-four percent of adults.
[pic]Although individuals with ADHD can be very successful in life, without identification and proper treatment ADHD can have serious consequences, including school failure, depression, conduct disorder, failed relationships, and substance abuse.
[pic]Early identification and treatment increase the likelihood of positive long-term outcomes.1
[pic]The first step in helping your child is to obtain a truly complete and through diagnostic evaluation by your child's physician or a professional therapist.
Three types of
Attention Deficit Hyperactivity Disorder (ADHD)
The following behaviors must be exhibited in
at least 2 separate settings:
|Type I |Type II |
|ADHD - Predominately Inattentive Type |ADHD - Predominately Hyperactive Type |
|Requires 6 of the 9 symptoms below |Requires 6 of the 9 symptoms below |
|1. Often fails to pay attention to details |1. Fidgets with hands and feet |
|2. Makes careless mistakes |2. Often leaves seat in classroom |
|3. Difficulty staying on task |3. Runs about or climbs excessively |
|4. Doesn't follow through |4. Can't play quietly |
|5. Doesn't seem to listen |5. "On the go" - "Motor always running" |
|6. Poor organizational skills |6. Talks excessively |
|7. Loses important things |7. Blurts our answers |
|8. Easily distracted |8. Can't wait his turn |
|9. Forgetful of daily activities |9. Often interrupts or intrudes on others |
|Type III ADHD - Combined Type |
|6 symptoms from Inattentive Type |
|6 Symptoms from hyperactive Type |
NOTE: This self-assessment chart is offered for information and educational purposes only. It is not presented with the intention of diagnosing or prescribing. Should you find that the total rating score exceeds that as addressed above, you may want to consult your primary care physician or a professional therapist experienced in the area of conduct disorders for further discussion.2
1. Information provided in part by CHADD
2. Reprinted in part with permission from Connecticut Educational Services (CES)
Related Articles:
Health & Safety Links
Identifying Behavioral Disorders
Request a "House Call" with Dr. Reynolds
Dr. Robert F. Reynolds - Biography
|[pic] |Identifying Behavioral Disorders |
|Home Page |ODD, CD, and Bullying |
[pic]
Related Articles:
Health & Safety Links
Identifying Attention Deficit Hyperactivity Disorder (ADHD)
Request a "House Call" with Dr. Reynolds
Dr. Robert F. Reynolds - Biography
There are 2 types of childhood behavior disorders. The first is Oppositional Defiant Disorder, or ODD and the second is Conduct Disorder, or CD.
Oppositional Defiant Disorder (ODD) - Oppositional Defiant Disorder is defined as a recurrent pattern of negativistic, defiant, disobedient, and hostile behavior toward authority figures. There is a current trend of increased occurance of ODD in young children, ages 4-6 years.
How do you know if your child's misbehavior is typical or a sign of something more serious?
The key to this issue is how frequently the behaviors occur. Every child has a bad day, but is this a pattern? Has it lasted over time?
The child with ODD shows a pattern of negative, hostile, defiant and disobedient behavior usually directed at parents. Here are some examples:
[pic]Often loses his temper.
[pic]Often argues with you
[pic]Refuses to follow your rules.
[pic]Deliberately annoys others.
[pic]Constantly blames others for what they did wrong.
[pic]Often seems angry and resentful.
ODD children are not always ill tempered, and can often be quite loving, at times. But when they go off, they go off big-time. These behaviors are usually seen at home at first but as the child gets older, behavioral meltdowns become more frequent and start to show up outside the home.
Conduct Disorder - A conduct disorder is defined as repetitive and persistent pattern of behavior in which the basic rights of others or major age-appropriate societal norms or rules are violated. See Checklist below.
Children with Conduct Disorder are much more severely disturbed and demonstrate behaviors that actually violate societal norms. Examples of CD behaviors include:
[pic]Aggression to people or animals
[pic]Destruction of property
[pic]Lying and theft
[pic]Running away from home
[pic]School truancy
[pic]Bullying
If your child is 6 or 7 and is demonstrating ODD or CD-like behavior patterns, I strongly urge you to take him to a psychologist who specializes in diagnosing and treating these children and their families.
In all likelihood, as a parent you are exhausted, at your wits end and may be having significant marital and family problems. Typically one parent takes a hard line, punishment-oriented approach while the other tries to counterbalance this with more permissiveness and disagreements ensue. Neither approach is likely to work because children with these disorders do not typically respond well to praise and punishment. Even punishment, after a while, loses its effectiveness.
If there are other children in the family, chances are that they are suffering also. These are family problems. My message to you is to get help and to get it now before it's too late. There is a very good book that has come out recently by Dr. Ross Greene, called The Explosive Child. I highly recommend it as a starting point but it is not a substitute for professional help.
Untreated, these problems only get worse with time, not better.
A Related and Important Behavioral Issue is Bullying.
The Facts:
[pic]What is bullying? Bullying is a pattern of aggressive behavior in which one child is in a more powerful position that another and exploits this advantage.
Recent surveys have shown that more than 25% of children in middle school have experienced bullying either as a victim, a bully or both. These children often demonstrate poor social and emotional adjustment.
[pic]Bullying is most common in middle school and drops off in high school.
[pic]Bullying occurs more frequently with boys and often involves physical violence while girls tend to start rumors or make sexually demeaning comments. Interestingly, although bullying often involves put downs about another student's appearance or speech, it rarely involves racial or religious slurs.
[pic]You also may be surprised to learn that bullies tend to be popular and to make friends rather easily so there is apparently a social payoff to bulling.
[pic]However, the downside is that bullies are more likely to smoke, abuse alcohol and do poorly in school.
[pic]Victims of bullies, on the other hand, have few friends, are often lonely, and prone to depression.
[pic]The students who show the worst adjustment are those who have been both bullies themselves and the victim of bullies.
[pic]Revenge for bullying has played a role in some of the recent school shootings.
[pic]So what can be done about bullying? School programs are proving to be the most effective way to reduce episodes of bullying and its harmful, sometimes devastating consequences. Such programs in Europe have reduced episodes of bullying by upwards of 50% and appear much more promising than the zero tolerance programs found in most U.S. schools.
If your child's school does not have such a program, you may want to ask why.
Reprinted with permission from Connecticut Educational Services (CES)
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