The following information was found at firstsigns.org. Please comment at the end to share personal stories regarding these various syndromes!
Although developmental and behavioral disorders are increasingly widespread, they are still poorly understood by most of society. The lack of knowledge is further compounded by the stigma that often accompanies a diagnosis of a developmental or behavioral disorder. Parents and physicians can educate themselves and others about the range of disorders, as well as the opportunities for treatment and intervention. Whether a child has a developmental delay or disorder, early identification and intervention are essential for achieving the best possible outcome.
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The most common developmental disorder is mental retardation. According to theCDC, more than one out of every 100 school children in the United States has some form of mental retardation. Cerebral palsy is the second most common developmental disorder, followed by autism spectrum disorders.
The following list outlines different types of developmental and behavioral disorders, provides a brief description for each, and identifies Web sites that may serve as an introductory resource for parents.
Attention-deficit/hyperactivity disorder (ADHD) is one of the most common neurobehavioral disorders, characterized by problems with inattentiveness, over-activity, impulsivity, or a combination. For these problems to be diagnosed as AD/HD, they must be out of the normal range for the child's age and development. It is usually first diagnosed in childhood and often persists into adulthood. Diagnosis can be made reliably using well-tested diagnostic interview methods. Treatment may include medical, educational, behavioral, and/or psychological interventions. ADHD is a lifelong disorder that can negatively impair many aspects of daily life if not treated, including home, school, work, and interpersonal relationships.
For more information, please visit: Children and Adults with Attention-Deficit/Hyperactivity Disorder.
Angelman Syndrome is a genetic disorder in which a gene on chromosome 15 is missing or unexpressed. Children with Angelman Syndrome typically have developmental delays that are frequently evident between 6-12 months of age.Diagnosis can be established through genetic and DNA testing as early as the first year of life. In affected children, language comprehension and non-verbal skills are usually more developed than spoken language and the affected child may have few if any words. Children with Angelman Syndrome have difficulties with movement and balance. Their behavior may combine frequent laughter and smiling, an easily excitable personality, hand flapping movements, hyperactive behavior, and a short attention span. Associated physical features and concerns, such as seizures, movement problems, hypopigmentation, sleep and feeding problems, are present in about 20-80% of children who have this disorder. Many educational and behavioral interventions have been shown to be effective in addition to physical and occupational therapies, speech and language interventions, behavior modification, and parent training.
For more information, please visit: Angelman Syndrome Foundation.
Please visit First Signs’ Web page dedicated to autism spectrum disorders where we provide a detailed description of these disorders.
Bipolar disorder (or manic depression) is a form of mood disorder characterized by a variation of moods that fluctuate between a manic phase of elation, hyperactivity and hyper imagination, and a depressive phase of inhibition, slowness to conceive ideas and move, and anxiety or sadness. Symptoms may be present from infancy or early childhood, or may suddenly emerge in adolescence or adulthood. Children—whose symptoms present differently than those of adults—can experience severe and sudden mood changes many times a day. For a diagnosis of bipolar disorder, adult criteria must be met through a variety of measures. There are as yet no separate criteria for diagnosing children. Bipolar disorder is a chronic condition that can be managed with medication, close monitoring of symptoms, education about the illness, counseling or psychotherapy for the individual and family, stress reduction, dietary restrictions and nutritional supplements, regular sleep and exercise, and participation in a network of support.
For more information, please visit: Child and Adolescent Bipolar Foundation
Central Auditory Processing Disorder (CAPD) is a complex and often misunderstood neurological disorder that occurs in individuals with normal hearing who have a reduced or impaired ability to discriminate, recognize, or understand sounds. The symptoms are highly individual, ranging from mild to severe with many different causes and expressions. Children with CAPD cannot fully process auditory information passed between the ear and the brain. They may have difficulties hearing amidst distracting background noise, remembering information, discriminating between similar sounds or words, or listening long enough to complete a task. CAPD may affect their ability to develop normal language skills, succeed academically, or communicate effectively.
Trained specialists, such as speech-language pathologists and audiologists, can assess CAPD using auditory tests such as behavioral and electrophysiologic tests. Speech-language pathologists and other educational specialists can provide a variety of treatment strategies to help children with CAPD work around many of the receptive, organizational and retention challenges caused by this disorder. Some children’s auditory processing skills may well mature developmentally to the point where they become indistinguishable from other children. Others may have more chronic symptoms throughout their lives.
For more information, please visit: American Speech-Language Hearing Association(ASHA)
Cerebral palsy is a disorder caused by damage to the brain that occurs before, during, or shortly following birth. It affects body movement and muscle coordination. Individuals with cerebral palsy may also experience seizures, abnormal speech, hearing and visual impairments, and mental retardation. Children with cerebral palsy may not be able to walk, talk, eat, or play in the same ways as most other children. Cerebral palsy can include milder versions or more severe symptoms which lead to total dependency. Although cerebral palsy is a lifelong condition, training and therapy can help improve function.
For more information, please visit: United Cerebral Palsy Association
Down Syndrome is a chromosomal abnormality that changes the course of development and causes the characteristics associated with the syndrome. Mild to severe mental retardation can be present among those affected. Speech and language may also be delayed. The diagnosis is usually suspected at birth due to the presence of physical characteristics such as a large tongue, heart problems, poor muscle tone, and flat facial features. The diagnosis is confirmed through chromosomal testing. The disorder is associated with a lifelong disability but can be treated through a variety of appropriate educational and behavioral interventions in addition to occupational therapies, speech and language interventions, behavior modification, and parent training.
For more information, please visit: National Down Syndrome Society
Expressive language disorder is a developmental disorder where a child will have problems expressing him or herself in speech. Characteristics may include limited vocabulary, difficulty recalling words and producing complex or lengthy sentences. Children with expressive disorder often start speaking late and experience delays acquiring expressive language. Standardized expressive language and non-verbal intellectual tests, and in certain cases functional assessments, should be conducted if an expressive language disorder is suspected. Expressive language disorders may interfere with academics and social communication. Speech therapy and social skills therapies may benefit children affected by this disorder.
For more information, please visit: Medline Expressive Language Disorder.
Fragile X Syndrome is a genetic disorder and is the most common form of inherited mental retardation. It is more common in boys than girls. Individuals with this disorder often have distinctive physical features, such as a long face, large prominent ears and hyperextensible joints. People with Fragile X syndrome may experience some degree of mental retardation or learning disabilities along with speech and language delays. In addition, 15-20% may also exhibit behaviors associated with autism. DNA testing can determine a diagnosis for Fragile X, which is a lifelong disorder with no cure, but treatable with behavioral and educational therapies.
For more information, please visit: FRAXA Research Foundation
Isodicentric 15, abbreviated idic(15), is one of a group of genetic conditions. Most children and adults with idic(15) experience developmental disabilities. These can range from mild to severe and may be accompanied by other neurological, physical, and behavioral problems. Although there are few common physical features, structural differences such as a flat bridge of the nose (button nose), folds at the corners of the eyes, and others may be present. Individuals may also demonstrate hypotonia and seizures. The disorder is diagnosed through chromosomal blood testing and is confirmed by a genetic test called fluorescence in situ hybridization (FISH). Therapies such as physical, occupational, and speech therapies along with special education techniques are available to help address many of the symptoms of idic(15) and can help these children to develop to their full potential.
For more information, please visit:I.D.E.A.S. IsoDicentric 15 Exchange, Advocacy & Support
Landau-Kleffner Syndrome (LKS) is a childhood disorder that is characterized by a progressive loss of the ability to understand and use spoken language, following a period of normal speech development. LKS occurs most frequently in typically developing children who are between 3 and 7 years of age. It is often accompanied by nighttime seizure activity and is typically diagnosed through a sleep EEG. Some treatments include medication to control the seizures, corticosteroid therapy to improve language ability, and sign language instruction. Although language recovery has been reported in some cases, it is impossible to predict the outcome of this disorder due to the range of differences in affected individuals and the relative lack of clinical and neurobehavioral research.
For more information, please visit:NIDCD Health Information Page - Landau-Kleffner Syndrome
Learning disabilities are a group of neurological disorders which become evident in childhood and which are characterized by difficulty learning, sorting, and storing information. Usually affected individuals have with average or above average intelligence. Children with learning disabilities may have one or more difficulties with skills such as listening, speaking, reading, writing, reasoning, or mathematical abilities that interfere with academic performance, achievement and, in some cases, activities of daily living. Learning disabilities may overlap with other disorders or environmental influences, but are not the direct result of those conditions or influences. Often these disabilities are not identified until a child reaches school age. Performance on standardized tests are usually found to be below that expected for age, schooling, and level of intelligence. Standardized cognitive measures and diagnostic tools in addition to observations from education professionals help to identify areas where these children are experiencing problems. Some children find learning in a regular classroom difficult and LD classes may be recommended to help them receive more specific and intensive teaching. They may require information to be presented in multiple formats and broken down in manageable chunks before they can completely understand it. Learning disabilities are lifelong, but with proper intervention, training, and strategies, individuals can lead successful, fully functioning lives.
For more information, please visit: National Center for Learning Disabilities
Mental retardation is a disability that occurs in childhood characterized by substantial limitations in intellectual functioning and adaptive skills. A person with mental retardation may have difficulties with communication, conceptual skills, social skills, self-care, home living, social skills, community use, self-direction, health and safety, functional academics, leisure, and work. Diagnosis is performed through a) standardized testing; b) determining an individual’s strengths and challenges in intellectual and adaptive behavior skills, psychological and emotional considerations, physical and health considerations, and environmental considerations; and c) determining supports needed through an interdisciplinary team. Interventional strategies are delivered by providing resource supports and specific strategies so as to promote the development, education, interests, and personal well-being of the affected child, adolescent or adult. Providing individualized supports can improve personal functioning, promote self-determination and societal inclusion, and improve personal well-being of a person with mental retardation.
For more information, please visit:
The ARC and the American Association on Mental Retardation (AAMR)
Neural tube defects are birth defects that involve the central nervous system. These defects of the spinal cord and/or brain result from failure of the neural tube to properly form. These disorders may present varying degrees of disability, including learning disabilities, social issues, lower extremity paralysis, loss of bowel or bladder control, and hydrocephalus (water on the brain), which can produce retardation unless it is surgically treated. Spina bifida is the most common neural tube defect where the spinal cord does not close over the nerve column during the prenatal period. It may involve loss of sensation and severe muscle weakness of the body below the level of the lesion. Although outcomes vary widely, with new medical treatments and technology, many people with spina bifida can expect to live a normal life, and often have careers, get married, and have families.
For more information, please visit: Spina Bifida Association of America
PKU is an inherited metabolic disorder in which the body cannot metabolize the amino acid phenylalanine that is present in many common foods. If treatment of the disease is not started within the first few weeks of life, PKU can cause various degrees of mental retardation, seizures, and other neurological problems. Because of the very positive outcome when children are identified and treated early, newborn screening for PKU is carried out in every state in the U.S. and in many other countries. Dietary restriction of very high protein foods and use of a synthetic formula as a nutritional substitute can reduce or eliminate these problems, thus helping children with PKU to expect normal development and a normal life span.
For more information, please visit: National PKU News
Prader-Willi Syndrome is a combination of birth defects caused by inheriting both copies of the #15 chromosome from the mother (25%) or by inheriting a deletion of a region of chromosome #15 from the father (75% of PWS). Signs of PWS include hypotonia, global developmental delay evident before age 6, feeding problems in infancy, narrow face, almond-shaped eyes, small-appearing mouth, hypopigmentation, motor planning problems, behavioral problems, sleep disturbances and compulsive eating problems. Diagnosis is made through genetic and DNA testing. Treatments include food restriction, daily exercise, medication, physical and occupational therapies, speech therapy, growth hormone therapy, and special education services. If weight is controlled, life expectancy may be normal, and the individual’s health and functioning can be maximized.
For more information, please visit: Prader-Willi Syndrome Association
Seizure disorders are neurological disorders that may cause physical convulsions, minor physical signs, thought disturbances, or a combination of symptoms that are the result of uncontrolled electrical activity in the brain. An individual with a seizure disorder, such as epilepsy, may experience one or more different types and levels of severity of seizure. The condition can develop at any time of life, especially in early childhood, during adolescence and old age. Treatments included seizure-preventing medicines, surgery, ketogenic diet (primarily in children), or electrical stimulation of the vagus nerve, a large nerve leading into the brain. Although seizure medications are not a cure, they control seizures in the majority of people with epilepsy. For some, seizure disorders will be a temporary problem, easily controlled with medication and outgrown after a few years. For others, it may be a lifelong challenge affecting many areas of life.
For more information, please visit: Epilepsy Foundation
Tourette Syndrome is a neurological disorder characterized, in mild form, by recurring involuntary body movements and sounds (called tics) and, in advanced cases by large involuntary bodily movements, noises like barks and whistles, and in many instances an uncontrollable urge to utter obscenities. People with Tourette Syndrome are often impulsive and have other symptoms of Attention Deficit Disorder. While the average age of onset of Tourette Syndrome is 6-7 years old, there are many cases where parents later realized that their child's tics had actually started much younger. In almost all cases, Tourette Syndrome emerges before age 18, but there are exceptions. The diagnosis is based on patient history, observation, and testing to rule out other conditions. Most cases of TS are thought to be "mild," meaning that the individual does not seek treatment and/or does not experience significant interference in their life from their tics. If tics become problematic, treatment options are available. There are a variety of medications that may provide some relief from the tics and at least one empirically validated non-medication treatment for tics.
For more information, please visit: Tourette Syndrome “Plus”
Traumatic Brain Injury (TBI) is a disability category that occurs as the result of an injury to the brain as a result of an accident, insufficient oxygen, poisoning or infection at any time during an individual’s life. It does not include congenital or degenerative brain injuries or brain injuries caused by birth trauma. Traumatic brain injuries may result in impairment in cognition, language, social skills, memory, attention, reasoning, behavior, physical functioning, psychological functioning, information processing, or speech. Physical challenges can include ambulation, balance, coordination, fine motor skills, strength, and endurance. Medical and neurology specialists determine a diagnosis using behavioral and neuropsychological assessments. In addition to rehabilitation services, individuals with TBI are treated with many of the services and supports as individuals with developmental disabilities. Outcomes vary by level of injury, with the goal for many being to return to school or to work, but with new and different levels of support.
For more information, please visit: Traumatic Brain Injury Resource Guide
Williams Syndrome is a rare genetic disorder present at birth that is associated with deletion of genetic material in chromosome 7. The disorder is characterized by the following physical features: unique elfin facial features, heart and blood vessel problems, elevated blood calcium levels, slow weight gain, feeding problems, colic, dental problems, kidney problems, hernias, and hypotonia. Children with Williams Syndrome may be excessively social and have developmental delays, learning disabilities, and attention deficit. The disorder is diagnosed by genetic blood test through a technique called fluorescence in situ hybridization (FISH). Treatment typically includes physical, occupational and speech therapies. Most adults with Williams Syndrome are able to complete school and hold jobs. Many live with their parents, in supervised settings or on their own.
For more information, please visit: Williams Syndrome Association (WSA)
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