For decades, people suffering from chronic fatigue syndrome have struggled to convince doctors, employers, friends and even family members that they were not imagining their debilitating symptoms. Skeptics called the illness“yuppie flu” and “shirker syndrome.”
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Donna Flowers was once debilitated by chronic fatigue but has tamed her disease with exercise and treatment.
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But the syndrome is now finally gaining some official respect. The Centers for Disease Control and Prevention, which in 1999 acknowledged that it had diverted millions of dollars allocated by Congress for chronic fatigue syndrome research to other programs, has released studies that linked the condition to genetic mutations and abnormalities in gene expression involved in key physiological processes.
The agency has also sponsored a $6 million public awareness campaign about the illness. And last year, it released survey data suggesting that the prevalence of the syndrome is far higher than previously thought, although these findings have stirred controversy among patients and scientists.
Some scientists and many patients remain highly critical of the C.D.C.’s record on chronic fatigue syndrome. But nearly everyone now agrees that the syndrome is real.
“People with C.F.S. are as sick and as functionally impaired as someone with AIDS, with breast cancer, with chronic obstructive pulmonary disease,” said Dr. William Reeves, the lead expert on the illness at the disease control agency, who helped expose its misuse of chronic fatigue financing.
Chronic fatigue syndrome was first identified as a distinct entity in the 1980s. (A virtually identical illness had been identified in Britain three decades earlier and called myalgic encephalomyelitis.) The illness, which afflicts more women than men, causes overwhelming fatigue, sleep disorders and other severe symptoms. No consistent biomarkers have been identified and no treatments have been approved for addressing the underlying causes, although some medications provide symptomatic relief.
Patients say the word “fatigue” does not begin to describe their condition. Donna Flowers of Los Gatos, Calif., a physical therapist and former professional figure skater, said the profound exhaustion was unlike anything she had ever experienced.
“I slept for 12 to 14 hours a day but still felt sleep-deprived,” said Ms. Flowers, 51, who fell ill several years ago after a bout of mononucleosis. “I had what we call ‘brain fog.’ I couldn’t think straight, and I could barely read. I couldn’t get the energy to go out of the door. I thought I was doomed. I wanted to die.”
Studies have shown that people with the syndrome experience abnormalities in the central and autonomic nervous systems, the immune system, cognitive functions, the stress response pathways and other major biological functions. Researchers believe the illness will ultimately prove to have multiple causes, including genetic predisposition and exposure to microbial agents, toxins and other physical and emotional traumas. Studies have linked the onset of chronic fatigue syndrome with an acute bout of Lyme disease, Q fever, Ross River virus, parvovirus, mononucleosis and other infectious diseases.
“It’s unlikely that this big cluster of people who fit the symptoms all have the same triggers,” said Kimberly McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, the advocacy group in charge of the C.D.C.-sponsored awareness campaign. “You’re looking not just at apples and oranges but pineapples, hot dogs and skateboards, too.”
Under the most widely used case definition, a diagnosis of chronic fatigue syndrome requires six months of unexplained fatigue as well as four of eight other persistent symptoms: impaired memory and concentration, sore throat, tender lymph nodes, muscle pain, joint pain, headaches, disturbed sleeping patterns and feelings of malaise after exertion.
The broadness of the definition has led to varying estimates of the syndrome’s prevalence. Based on previous surveys, the C.D.C. has estimated that more than a million Americans have the illness.
Last month, however, the agency reported that a randomized telephone survey in Georgia, using a less restrictive methodology to identify cases, found that about one in 40 adults ages 18 to 59 met the diagnostic criteria — an estimate 6 to 10 times higher than previously reported rates.
Many patients and researchers fear that the expanded prevalence rate could complicate the search for consistent findings across patient cohorts. These critics say the new figures are greatly inflated and include many people who are likely to be suffering not from chronic fatigue syndrome but from psychiatric illnesses.
“There are many, many conditions that are psychological in nature that share symptoms with this illness but do not share much of the underlying biology,” said John Herd, 55, a former medical illustrator and a C.F.S. patient for two decades.
Researchers and patient advocates have faulted other aspects of the C.D.C.’s research.
Dr. Jonathan Kerr, a microbiologist and chronic fatigue expert at St. George’s University of London, said the agency’s gene expression findings last year were “rather meaningless” because they were not confirmed through more advanced laboratory techniques.
Kristin Loomis, executive director of the HHV-6 Foundation, a research advocacy group for a form of herpes virus that has been linked to C.F.S., said studying subsets of patients with similar profiles was more likely to generate useful findings than Dr. Reeves’s population-based approach.
Dr. Reeves responded that understanding of the disease and of some newer research technologies is still in its infancy, so methodological disagreements were to be expected. He defended the population-based approach as necessary for obtaining a broad picture and replicable results. “To me, this is the usual scientific dialogue,” he said.
Dr. Jose G. Montoya, a Stanford infectious disease specialist pursuing the kind of research favored by Ms. Loomis, caused a buzz last December when he reported remarkable improvement in 9 out of 12 patients given a powerful antiviral medication, valganciclovir. Dr. Montoya has recently completed a randomized controlled trial of the drug, which is approved for other uses, but the findings have not been released.
Dr. Montoya said some cases of the syndrome were caused when an acute infection set off a recurrence of latent infections of Epstein Barr virus and HHV-6, two pathogens that most people are exposed to in childhood. Ms. Flowers, the former figure skater, had high levels of antibodies to both viruses and was one of Dr. Montoya’s initial C.F.S. patients.
Six months after starting treatment, Ms. Flowers said, she was able to go snowboarding and take yoga and ballet classes. “Now I pace myself, but I’m probably 75 percent of normal,” she said.
Many patients point to another problem with chronic fatigue syndrome: the name itself, which they say trivializes their condition and has discouraged researchers, drug companies and government agencies from taking it seriously. Many patients prefer the older British term, myalgic encephalomyelitis, which means “muscle pain with inflammation of the brain and spinal cord,” or a more generic term, myalgic encephalopathy.
“You can change people’s attributions of the seriousness of the illness if you have a more medical-sounding name,” said Dr. Leonard Jason, a professor of community psychology at DePaul University in Chicago.
Defenition: Autism is a brain development disorder that impairs social interaction and communication, and causes restricted and repetitive behavior, all starting before a child is three years old. This set of signs distinguishes autism from milder autism spectrum disorders (ASD) such as Asperger syndrome.
Most infants and young children are very social creatures who need and want contact with others to thrive and grow. They smile, cuddle, laugh, and respond eagerly to games like “peek-a-boo” or hide-and-seek. Occasionally, however, a child does not interact in this expected manner. Instead, the child seems to exist in his or her own world, a place characterized by repetitive routines, odd and peculiar behaviors, problems in communication, and a lack of social awareness or interest in others. These are characteristics of a developmental disorder called autism……….CLICK & SEE
Autism has a strong genetic basis, although the genetics of autism are complex and it is unclear whether ASD is explained more by multigene interactions or by rare mutations. In rare cases, autism is strongly associated with agents that cause birth defects. Other proposed causes, such as childhood vaccines, are controversial and the vaccine hypotheses lack convincing scientific evidence. Most recent reviews estimate a prevalence of one to two cases per 1,000 people for autism, and about six per 1,000 for ASD, with ASD averaging a 4.3:1 male-to-female ratio. The number of people known to have autism has increased dramatically since the 1980s, at least partly due to changes in diagnostic practice; the question of whether actual prevalence has increased is unresolved.
Autism affects many parts of the brain; how this occurs is poorly understood. Parents usually notice signs in the first two years of their child’s life. Early behavioral or cognitive intervention can help children gain self-care, social, and communication skills. There is no cure. Few children with autism live independently after reaching adulthood, but some become successful, and an autistic culture has developed, with some seeking a cure and others believing that autism is a condition rather than a disorder.
Characteristics : Autism is distinguished by a pattern of symptoms rather than one single symptom. The main characteristics are impairments in social interaction, impairments in communication, restricted interests and repetitive behavior. Other aspects, such as atypical eating, are also common but are not essential for diagnosis. Individual symptoms of autism occur in the general population and appear not to associate highly, without a sharp line separating pathological severity from common traits.
Symptoms:
Autism is usually identified by the time a child is three years of age. It is often discovered when parents become concerned that their child may be deaf, is not yet talking, resists cuddling, and avoids interactions with others.
A preschool age child with “classic” autism is generally withdrawn, aloof, and fails to respond to other people. Many of these children will not even make eye contact. They may also engage in odd or ritualistic behaviors like rocking, hand flapping, or an obsessive need to maintain order.
Many children with autism do not speak at all. Those who do may speak in rhyme, have echolalia (repeating a person’s words like an echo), refer to themselves as “he” or “she”, or use peculiar language.
The severity of autism varies widely, from mild to severe. With proper supports, many of these children are able to perform well in a school setting and may be able to live independently when they grow up. Other children with autism function at a much lower level. Mental retardation is commonly associated with autism. Occasionally, a child with autism may display an extraordinary talent in art, music, or another specific area.
Autistic individuals display many forms of repetitive or restricted behavior, which the Repetitive Behavior Scale-Revised (RBS-R) categorizes as follows.
* Stereotypy is apparently purposeless movement, such as hand flapping, head rolling, or body rocking.
* Compulsive behavior is intended and appears to follow rules, such as arranging objects in a certain way.
* Sameness is resistance to change; for example, insisting that the furniture not be moved or refusing to be interrupted.
* Ritualistic behavior involves the performance of daily activities the same way each time, such as an unvarying menu or dressing ritual. This is closely associated with sameness and an independent validation has suggested combining the two factors.
* Restricted behavior is limited in focus, interest, or activity, such as preoccupation with a single television program.
* Self-injury includes movements that injure or can injure the person, such as biting oneself. Dominick et al. reported that self-injury at some point affected about 30% of children with ASD.
No single repetitive behavior seems to be specific to autism, but only autism appears to have an elevated pattern of occurrence and severity of these behaviors.
* Lack of pointing to direct others’ attention to objects (occurs in the first 14 months of life)
* Does not adjust gaze to look at objects that others are looking at
* Cannot start or sustain a social conversation
* Develops language slowly or not at all
* Repeats words or memorized passages, such as commercials
* Does not refer to self correctly (for example, says “you want water” when the child means “I want water”)
* Uses nonsense rhyming
* Communicates with gestures instead of words
* Shows a lack of empathy
* Does not make friends
* Is withdrawn
* Prefers to spend time alone, rather than with others
* May not respond to eye contact or smiles
* May actually avoid eye contact
* May treat others as if they are objects
* Does not play interactive games
Response to sensory information:
* Has heightened or low senses of sight, hearing, touch, smell, or taste
* Seems to have a heightened or low response to pain
* May withdraw from physical contact because it is overstimulating or overwhelming
* Does not startle at loud noises
* May find normal noises painful and hold hands over ears
* Rubs surfaces, mouths or licks objects
Play:
* Shows little pretend or imaginative play
* Doesn’t imitate the actions of others
* Prefers solitary or ritualistic play
Behaviors:
* Has a short attention span
* Uses repetitive body movements
* Shows a strong need for sameness
* “Acts up” with intense tantrums
* Has very narrow interests
* Demonstrates perseveration (gets stuck on a single topic or task)
* Shows aggression to others or self
* Is overactive or very passive
Causes:
The cause of autism remains unknown, although current theories indicate a problem with function or structure of the central nervous system. What we do know, however, is that parents or “inadequate parenting” do not cause autism.
Genetic factors seem to be important. For example, identical twins are much more likely than fraternal twins or siblings to both have autism. Similarly, language abnormalities are more common in relatives of autistic children. Chromosomal abnormalities and other neurological problems are also more common in families with autism.
A number of other possible causes have been suspected, but not proven. They involve digestive tract changes, diet, mercury poisoning, vaccine sensitivity, and the body’s inefficient use of vitamins and minerals.
The exact number of children with autism is not known. A report released by the U.S. Centers for Disease Control and Prevention (CDC) suggests that autism and related disorders are more common than previously thought, although it is unclear if this is due to an increasing rate of the illness or an increased ability to diagnose the illness.
Autism affects boys 3 to 4 times more often than girls. Family income, education, and lifestyle do not seem to affect the risk of autism.
Some parents have heard that the MMR vaccine that children receive may cause autism. This theory was based, in part, on two facts. First, the incidence of autism has increased steadily since around the same time the MMR vaccine was introduced. Second, children with the regressive form of autism (a type of autism that develops after a period of normal development) tend to start to show symptoms around the time the MMR vaccine is given. This is likely a coincidence due to the age of children at the time they receive this vaccine.
Several major studies have found NO connection between the vaccine and autism, however. The American Academy of Pediatrics and the Center for Disease Control and Prevention report that there is no proven link between autism and the MMR vaccine.
Some doctors attribute the increased incidence in autism to newer definitions of autism. The term “autism” now includes a wider spectrum of children. For example, a child who is diagnosed with high-functioning autism today may have been thought to simply be odd or strange 30 years ago.
Screening & Diagnosis:
:All children should have routine developmental exams by their pediatrician. Further testing may be needed if there is concern on the part of the clinician or the parents. This is particularly true whenever a child fails to meet any of the following language milestones:
* Babbling by 12 months
* Gesturing (pointing, waving bye-bye) by 12 months
* Single words by 16 months
* Two-word spontaneous phrases by 24 months (not just echoing)
* Loss of any language or social skills at any age.
These children might receive a hearing evaluation, a blood lead test, and a screening test for autism (such as the Checklist for Autism in Toddlers (CHAT) or the Autism Screening Questionnaire).
A health care provider experienced in the diagnosis and treatment of autism is usually necessary for the actual diagnosis. Because there is no biological test for autism, the diagnosis will often be based on very specific criteria laid out in a book called the Diagnostic and Statistical Manual IV.
The other pervasive developmental disorders include:
* Asperger syndrome (like autism, but with normal language development)
* Rett syndrome (very different from autism, and only occurs in females)
* Childhood disintegrative disorder (rare condition where a child acquires skills, then loses them by age 10)
* Pervasive developmental disorder – not otherwise specified (PDD-NOS), also called atypical autism.
An evaluation of autism will often include a complete physical and neurologic examination. It may also include a specific diagnostic screening tool, such as:
Children with known or suspected autism will often have genetic testing (looking for chromosome abnormalities) and perhaps metabolic testing.
Autism encompasses a broad spectrum of symptoms. Therefore, a single, brief evaluation cannot predict a child’s true abilities. Ideally, a team of different specialists will evaluate the child. They might evaluate speech, language, communication, thinking abilities, motor skills, success at school, and other factors.
Underdiagnosis and overdiagnosis are problems in marginal cases, and much of the recent increase in the number of reported ASD cases is likely due to changes in diagnostic practices. The increasing popularity of drug treatment options and the expansion of benefits has given providers incentives to diagnose ASD, resulting in some overdiagnosis of children with uncertain symptoms. Conversely, the cost of screening and diagnosis and the challenge of obtaining payment can inhibit or delay diagnosis. It is particularly hard to diagnose autism among the visually impaired, partly because some of its diagnostic criteria depend on vision, and partly because autistic symptoms overlap with those of common blindness syndromes.
The symptoms of autism and ASD begin early in childhood but are occasionally missed. Adults may seek retrospective diagnoses to help them or their friends and family understand themselves, to help their employers make adjustments, or in some locations to claim disability living allowances or other benefits.
Sometimes people are reluctant to have a child diagnosed because of concerns about labeling the child. However, failure to make a diagnosis can lead to failure to get the treatment and services the child needs.
Treatment
An early, intensive, appropriate treatment program will greatly improve the outlook for most young children with autism. Most programs will build on the interests of the child in a highly structured schedule of constructive activities. Visual aids are often helpful.
Treatment is most successful when geared toward the child’s particular needs. An experienced specialist or team should design the individualized program. A variety of effective therapies are available, including applied behavior analysis (ABA), speech-language therapy, medications, occupational therapy, and physical therapy. Sensory integration and vision therapy are also common, but there is little research supporting their effectiveness. The best treatment plan may use a combination of techniques.
APPLIED BEHAVIORAL ANALYSIS (ABA)
This program is for younger children with an autism spectrum disorder. It highly effective in many cases. ABA uses a one-on-one teaching approach that relies on reinforced practice of various skills. The goal is to get the child close to typical developmental functioning.
ABA programs are usually conducted within a child’s home, under the supervision of a behavioral psychologist. Unfortunately, these programs can be very expensive and have not been widely adopted by school systems. Parents often must seek funding and staffing from other sources, which can be hard to find in many communities.
TEACCH
Another program is called the Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH). TEACCH, developed as a statewide program in North Carolina, uses picture schedules and other visual cues. These help the child work independently and to organize and structure their environments. Though TEACCH tries to enhance a child’s adaptation and skills, there is also an acceptance of the deficits associated with autism spectrum disorders. In contrast to ABA programs, TEACCH programs do not anticipate that children will achieve typical developmental progress in response to the treatment.
MEDICINE
Medicines are often used to treat behavior or emotional problems that people with autism may have. These include hyperactivity, impulsiveness, attention problems, irritability, mood swings, outbursts, tantrums, aggression, extreme compulsions that the child finds it impossible to suppress, sleep difficulty, and anxiety. Currently, only risperidone is approved for treatment of children ages 5-16 with irritability and aggression associated with autism.
DIET
Some children with autism appear to respond to a gluten-free or a casein-free diet. Gluten is found in foods containing wheat, rye, and barley. Casein is found in milk, cheese, and other dairy products. Not all experts agree that dietary changes will make a difference, and not all reports studying this method have shown positive results.
If considering these or other dietary changes, seek guidance from both a gastroenterologist (doctor who specializes in the digestive system) and a registered dietitian. You want to be sure that the child is still receiving adequate calories, nutrients, and a balanced diet.
OTHER APPROACHES
Beware that there are widely publicized treatments for autism that do not have scientific support, and reports of “miracle cures” that do not live up to expectations. If your child has autism, it may be helpful to talk with other parents of children with autism, talk with autism specialists, and follow the progress of research in this area, which is rapidly developing.
At one time, there was enormous excitement about using secretin infusions. Now, after many studies have been conducted in many laboratories, it’s possible that secretin is not effective after all, but research is ongoing.
Support Groups
For organizations that can provide additional information and help on autism, see autism resources.
Prognosis:
There is no cure. Children recover occasionally, sometimes after intensive treatment and sometimes not; it is not known how often this happens. Most children with autism lack social support, meaningful relationships, future employment opportunities or self-determination. Although core difficulties remain, symptoms often become less severe in later childhood. Few high-quality studies address long-term prognosis. Some adults show modest improvement in communication skills, but a few decline; no study has focused on autism after midlife. Acquiring language before age six, having IQ above 50, and having a marketable skill all predict better outcomes; independent living is unlikely with severe autism. A 2004 British study of 68 adults who were diagnosed before 1980 as autistic children with IQ above 50 found that 12% achieved a high level of independence as adults, 10% had some friends and were generally in work but required some support, 19% had some independence but were generally living at home and needed considerable support and supervision in daily living, 46% needed specialist residential provision from facilities specializing in ASD with a high level of support and very limited autonomy, and 12% needed high-level hospital care. A 2005 Swedish study of 78 adults that did not exclude low IQ found worse prognosis; for example, only 4% achieved independence. A 2008 Canadian study of 48 young adults diagnosed with ASD as preschoolers found outcomes ranging through poor (46%), fair (32%), good (17%), and very good (4%); only 56% had ever been employed, most in volunteer, sheltered or part time work. Changes in diagnostic practice and increased availability of effective early intervention make it unclear whether these findings can be generalized to recently diagnosed children.
Disclaimer: This information is not meant to be a substitute for professional medical advise or help. It is always best to consult with a Physician about serious health concerns. This information is in no way intended to diagnose or prescribe remedies.This is purely for educational purpose
Alternative Names : Pervasive developmental disorder – autism
Definition :Autism is a complex developmental disorder that appears in the first 3 years of life, although it is sometimes diagnosed much later. It affects the brain’s normal development of social and communication skills.
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Common features of autism include impaired social interactions, impaired verbal and nonverbal communication, problems processing information from the senses, and restricted and repetitive patterns of behavior…...click & see
Causes:
Autism is a physical condition linked to abnormal biology and chemistry in the brain. The exact causes of these abnormalities remain unknown, but this is a very active area of research. There are probably a combination of factors that lead to autism.
Genetic factors seem to be important. For example, identical twins are much more likely than fraternal twins or siblings to both have autism. Similarly, language abnormalities are more common in relatives of autistic children. Chromosomal abnormalities and other neurological problems are also more common in families with autism.
A number of other possible causes have been suspected, but not proven. They involve digestive tract changes, diet, mercury poisoning, vaccine sensitivity, and the body’s inefficient use of vitamins and minerals.
The exact number of children with autism is not known. A report released by the U.S. Centers for Disease Control and Prevention (CDC) suggests that autism and related disorders are more common than previously thought, although it is unclear if this is due to an increasing rate of the illness or an increased ability to diagnose the illness.
Autism affects boys 3 to 4 times more often than girls. Family income, education, and lifestyle do not seem to affect the risk of autism.
Some parents have heard that the MMR vaccine that children receive may cause autism. This theory was based, in part, on two facts. First, the incidence of autism has increased steadily since around the same time the MMR vaccine was introduced. Second, children with the regressive form of autism (a type of autism that develops after a period of normal development) tend to start to show symptoms around the time the MMR vaccine is given. This is likely a coincidence due to the age of children at the time they receive this vaccine.
Several major studies have found NO connection between the vaccine and autism, however. The American Academy of Pediatrics and the Center for Disease Control and Prevention report that there is no proven link between autism and the MMR vaccine.
Some doctors attribute the increased incidence in autism to newer definitions of autism. The term “autism” now includes a wider spectrum of children. For example, a child who is diagnosed with high-functioning autism today may have been thought to simply be odd or strange 30 years ago.
Symptoms : Most parents of autistic children suspect that something is wrong by the time the child is 18 months old and seek help by the time the child is 2. Children with autism typically have difficulties in verbal and nonverbal communication, social interactions, and pretend play. In some, aggression — toward others or self — may be present.
Some children with autism appear normal before age 1 or 2 and then suddenly “regress” and lose language or social skills they had previously gained. This is called the regressive type of autism.
People with autism may perform repeated body movements, show unusual attachments to objects or have unusual distress when routines are changed. Individuals may also experience sensitivities in the senses of sight, hearing, touch, smell, or taste. Such children, for example, will refuse to wear “itchy” clothes and become unduly distressed if forced because of the sensitivity of their skin. Some combination of the following areas may be affected in varying degrees.
Communication:
Lack of pointing to direct others’ attention to objects (occurs in the first 14 months of life)
Does not adjust gaze to look at objects that others are looking at
Cannot start or sustain a social conversation
Develops language slowly or not at all
Repeats words or memorized passages, such as commercials
Does not refer to self correctly (for example, says “you want water” when the child means “I want water”)
Uses nonsense rhyming
Communicates with gestures instead of words
Social interaction:
Shows a lack of empathy
Does not make friends
Is withdrawn
Prefers to spend time alone, rather than with others
May not respond to eye contact or smiles
May actually avoid eye contact
May treat others as if they are objects
Does not play interactive games
Response to sensory information:
Has heightened or low senses of sight, hearing, touch, smell, or taste
Seems to have a heightened or low response to pain
May withdraw from physical contact because it is overstimulating or overwhelming
Does not startle at loud noises
May find normal noises painful and hold hands over ears
Rubs surfaces, mouths or licks objects
Play:
Shows little pretend or imaginative play
Doesn’t imitate the actions of others
Prefers solitary or ritualistic play Behaviors:
Has a short attention span
Uses repetitive body movements
Shows a strong need for sameness
“Acts up” with intense tantrums
Has very narrow interests
Demonstrates perseveration (gets stuck on a single topic or task)
Shows aggression to others or self
Is overactive or very passive
Exams and Tests Return to top
All children should have routine developmental exams by their pediatrician. Further testing may be needed if there is concern on the part of the clinician or the parents. This is particularly true whenever a child fails to meet any of the following language milestones:
Babbling by 12 months
Gesturing (pointing, waving bye-bye) by 12 months
Single words by 16 months
Two-word spontaneous phrases by 24 months (not just echoing)
Loss of any language or social skills at any age.
These children might receive a hearing evaluation, a blood lead test, and a screening test for autism (such as the Checklist for Autism in Toddlers (CHAT) or the Autism Screening Questionnaire).
A health care provider experienced in the diagnosis and treatment of autism is usually necessary for the actual diagnosis. Because there is no biological test for autism, the diagnosis will often be based on very specific criteria laid out in a book called the Diagnostic and Statistical Manual IV.
The other pervasive developmental disorders include:
Asperger syndrome (like autism, but with normal language development) Rett syndrome (very different from autism, and only occurs in females)
Childhood disintegrative disorder (rare condition where a child acquires skills, then loses them by age 10)
Pervasive developmental disorder – not otherwise specified (PDD-NOS), also called atypical autism.
An evaluation of autism will often include a complete physical and neurologic examination. It may also include a specific diagnostic screening tool, such as: Autism Diagnostic Interview – Revised (ADI-R)
Autism Diagnostic Observation Schedule (ADOS)
Childhood Autism rating Scale (CARS)
Gilliam Autism Rating Scale
Pervasive Developmental Disorders Screening Test-Stage 3
Children with known or suspected autism will often have genetic testing (looking for chromosome abnormalities) and perhaps metabolic testing.
Autism encompasses a broad spectrum of symptoms. Therefore, a single, brief evaluation cannot predict a child’s true abilities. Ideally, a team of different specialists will evaluate the child. They might evaluate speech, language, communication, thinking abilities, motor skills, success at school, and other factors.
Sometimes people are reluctant to have a child diagnosed because of concerns about labeling the child. However, failure to make a diagnosis can lead to failure to get the treatment and services the child needs.
Treatment
An early, intensive, appropriate treatment program will greatly improve the outlook for most young children with autism. Most programs will build on the interests of the child in a highly structured schedule of constructive activities. Visual aids are often helpful.
Treatment is most successful when geared toward the child’s particular needs. An experienced specialist or team should design the individualized program. A variety of effective therapies are available, including applied behavior analysis (ABA), speech-language therapy, medications, occupational therapy, and physical therapy. Sensory integration and vision therapy are also common, but there is little research supporting their effectiveness. The best treatment plan may use a combination of techniques.
APPLIED BEHAVIORAL ANALYSIS (ABA)
This program is for younger children with an autism spectrum disorder. It highly effective in many cases. ABA uses a one-on-one teaching approach that relies on reinforced practice of various skills. The goal is to get the child close to typical developmental functioning.
ABA programs are usually conducted within a child’s home, under the supervision of a behavioral psychologist. Unfortunately, these programs can be very expensive and have not been widely adopted by school systems. Parents often must seek funding and staffing from other sources, which can be hard to find in many communities.
TEACCH
Another program is called the Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH). TEACCH, developed as a statewide program in North Carolina, uses picture schedules and other visual cues. These help the child work independently and to organize and structure their environments. Though TEACCH tries to enhance a child’s adaptation and skills, there is also an acceptance of the deficits associated with autism spectrum disorders. In contrast to ABA programs, TEACCH programs do not anticipate that children will achieve typical developmental progress in response to the treatment.
MEDICINE
Medicines are often used to treat behavior or emotional problems that people with autism may have. These include hyperactivity, impulsiveness, attention problems, irritability, mood swings, outbursts, tantrums, aggression, extreme compulsions that the child finds it impossible to suppress, sleep difficulty, and anxiety. Currently, only risperidone is approved for treatment of children ages 5-16 with irritability and aggression associated with autism.
DIET
Some children with autism appear to respond to a gluten-free or a casein-free diet. Gluten is found in foods containing wheat, rye, and barley. Casein is found in milk, cheese, and other dairy products. Not all experts agree that dietary changes will make a difference, and not all reports studying this method have shown positive results.
If considering these or other dietary changes, seek guidance from both a gastroenterologist (doctor who specializes in the digestive system) and a registered dietitian. You want to be sure that the child is still receiving adequate calories, nutrients, and a balanced diet.
OTHER APPROACHES
Beware that there are widely publicized treatments for autism that do not have scientific support, and reports of “miracle cures” that do not live up to expectations. If your child has autism, it may be helpful to talk with other parents of children with autism, talk with autism specialists, and follow the progress of research in this area, which is rapidly developing.
At one time, there was enormous excitement about using secretin infusions. Now, after many studies have been conducted in many laboratories, it’s possible that secretin is not effective after all, but research is ongoing.
Support Groups
For organizations that can provide additional information and help on autism, see autism resources.
Outlook (Prognosis)
Autism remains a challenging condition for individuals and their families, but the outlook today is much better than it was a generation ago. At that time, most people with autism were placed in institutions. Today, with appropriate therapy, many of the symptoms of autism can be improved, though most people will have some symptoms throughout their lives. Most people with autism are able to live with their families or in the community.
The outlook depends on the severity of the autism and the level of therapy the individual receives.
Possible Complications
Autism can be associated with other disorders that affect the brain, such as tuberous sclerosis, mental retardation, or fragile X syndrome. Some people with autism will develop seizures.
The stresses of dealing with autism can lead to social and emotional complications for family and caregivers, as well as the person with autism.
When to Contact a Medical Professional
Parents usually suspect that there is a developmental problem long before a diagnosis is made. Call your health care provider with any concerns about autism or if you are concerned that your child is not developing normally.
Disclaimer: This information is not meant to be a substitute for professional medical advise or help. It is always best to consult with a Physician about serious health concerns. This information is in no way intended to diagnose or prescribe remedies.This is purely for educational purpose.
