Attention Deficit Hyperactivity Disorder
Introduction
Attention Deficit Hyperactivity Disorder (ADHD) is a condition that becomes apparent in some children in the preschool and early school years. It is hard for these children to control their behavior and/or pay attention. It is estimated that between 3 and 5 percent of children have ADHD, or approximately 2 million children in the
ADHD was first described by Dr. Heinrich Hoffman in 1845. A physician who wrote books on medicine and psychiatry, Dr. Hoffman was also a poet who became interested in writing for children when he couldn't find suitable materials to read to his 3-year-old son. The result was a book of poems, complete with illustrations, about children and their characteristics. "The Story of Fidgety Philip" was an accurate description of a little boy who had attention deficit hyperactivity disorder. Yet it was not until 1902 that Sir George F. Still published a series of lectures to the Royal College of Physicians in England in which he described a group of impulsive children with significant behavioral problems, caused by a genetic dysfunction and not by poor child rearing—children who today would be easily recognized as having ADHD.1 Since then, several thousand scientific papers on the disorder have been published, providing information on its nature, course, causes, impairments, and treatments.
A child with ADHD faces a difficult but not insurmountable task ahead. In order to achieve his or her full potential, he or she should receive help, guidance, and understanding from parents, guidance counselors, and the public education system. This document offers information on ADHD and its management, including research on medications and behavioral interventions, as well as helpful resources on educational options.
Because ADHD often continues into adulthood, this document contains a section on the diagnosis and treatment of ADHD in adults.
Symptoms
The principal characteristics of ADHD are inattention, hyperactivity, and impulsivity. These symptoms appear early in a child’s life. Because many normal children may have these symptoms, but at a low level, or the symptoms may be caused by another disorder, it is important that the child receive a thorough examination and appropriate diagnosis by a well-qualified professional.
Symptoms of ADHD will appear over the course of many months, often with the symptoms of impulsiveness and hyperactivity preceding those of inattention, which may not emerge for a year or more. Different symptoms may appear in different settings, depending on the demands the situation may pose for the child’s self-control. A child who “can’t sit still” or is otherwise disruptive will be noticeable in school, but the inattentive daydreamer may be overlooked. The impulsive child who acts before thinking may be considered just a “discipline problem,” while the child who is passive or sluggish may be viewed as merely unmotivated. Yet both may have different types of ADHD. All children are sometimes restless, sometimes act without thinking, sometimes daydream the time away. When the child’s hyperactivity, distractibility, poor concentration, or impulsivity begin to affect performance in school, social relationships with other children, or behavior at home, ADHD may be suspected. But because the symptoms vary so much across settings, ADHD is not easy to diagnose. This is especially true when inattentiveness is the primary symptom.
According to the most recent version of the Diagnostic and Statistical Manual of Mental Disorders2 (DSM-IV-TR), there are three patterns of behavior that indicate ADHD. People with ADHD may show several signs of being consistently inattentive. They may have a pattern of being hyperactive and impulsive far more than others of their age. Or they may show all three types of behavior. This means that there are three subtypes of ADHD recognized by professionals. These are the predominantly hyperactive-impulsive type (that does not show significant inattention); the predominantly inattentive type (that does not show significant hyperactive-impulsive behavior) sometimes called ADD—an outdated term for this entire disorder; and the combined type (that displays both inattentive and hyperactive-impulsive symptoms).
Hyperactivity-Impulsivity
Hyperactive children always seem to be “on the go” or constantly in motion. They dash around touching or playing with whatever is in sight, or talk incessantly. Sitting still at dinner or during a school lesson or story can be a difficult task. They squirm and fidget in their seats or roam around the room. Or they may wiggle their feet, touch everything, or noisily tap their pencil. Hyperactive teenagers or adults may feel internally restless. They often report needing to stay busy and may try to do several things at once.
Impulsive children seem unable to curb their immediate reactions or think before they act. They will often blurt out inappropriate comments, display their emotions without restraint, and act without regard for the later consequences of their conduct. Their impulsivity may make it hard for them to wait for things they want or to take their turn in games. They may grab a toy from another child or hit when they’re upset. Even as teenagers or adults, they may impulsively choose to do things that have an immediate but small payoff rather than engage in activities that may take more effort yet provide much greater but delayed rewards.
Some signs of hyperactivity-impulsivity are:
- Feeling restless, often fidgeting with hands or feet, or squirming while seated
- Running, climbing, or leaving a seat in situations where sitting or quiet behavior is expected
- Blurting out answers before hearing the whole question
- Having difficulty waiting in line or taking turns.
Inattention
Children who are inattentive have a hard time keeping their minds on any one thing and may get bored with a task after only a few minutes. If they are doing something they really enjoy, they have no trouble paying attention. But focusing deliberate, conscious attention to organizing and completing a task or learning something new is difficult.
Homework is particularly hard for these children. They will forget to write down an assignment, or leave it at school. They will forget to bring a book home, or bring the wrong one. The homework, if finally finished, is full of errors and erasures. Homework is often accompanied by frustration for both parent and child.
The DSM-IV-TR gives these signs of inattention:
- Often becoming easily distracted by irrelevant sights and sounds
- Often failing to pay attention to details and making careless mistakes
- Rarely following instructions carefully and completely losing or forgetting things like toys, or pencils, books, and tools needed for a task
- Often skipping from one uncompleted activity to another.
Children diagnosed with the Predominantly Inattentive Type of ADHD are seldom impulsive or hyperactive, yet they have significant problems paying attention. They appear to be daydreaming, “spacey,” easily confused, slow moving, and lethargic. They may have difficulty processing information as quickly and accurately as other children. When the teacher gives oral or even written instructions, this child has a hard time understanding what he or she is supposed to do and makes frequent mistakes. Yet the child may sit quietly, unobtrusively, and even appear to be working but not fully attending to or understanding the task and the instructions.
These children don’t show significant problems with impulsivity and overactivity in the classroom, on the school ground, or at home. They may get along better with other children than the more impulsive and hyperactive types of ADHD, and they may not have the same sorts of social problems so common with the combined type of ADHD. So often their problems with inattention are overlooked. But they need help just as much as children with other types of ADHD, who cause more obvious problems in the classroom.
Is It Really ADHD?
Not everyone who is overly hyperactive, inattentive, or impulsive has ADHD. Since most people sometimes blurt out things they didn’t mean to say, or jump from one task to another, or become disorganized and forgetful, how can specialists tell if the problem is ADHD?
Because everyone shows some of these behaviors at times, the diagnosis requires that such behavior be demonstrated to a degree that is inappropriate for the person’s age. The diagnostic guidelines also contain specific requirements for determining when the symptoms indicate ADHD. The behaviors must appear early in life, before age 7, and continue for at least 6 months. Above all, the behaviors must create a real handicap in at least two areas of a person’s life such as in the schoolroom, on the playground, at home, in the community, or in social settings. So someone who shows some symptoms but whose schoolwork or friendships are not impaired by these behaviors would not be diagnosed with ADHD. Nor would a child who seems overly active on the playground but functions well elsewhere receive an ADHD diagnosis.
To assess whether a child has ADHD, specialists consider several critical questions: Are these behaviors excessive, long-term, and pervasive? That is, do they occur more often than in other children the same age? Are they a continuous problem, not just a response to a temporary situation? Do the behaviors occur in several settings or only in one specific place like the playground or in the schoolroom? The person’s pattern of behavior is compared against a set of criteria and characteristics of the disorder as listed in the DSM-IV-TR.
Diagnosis
Some parents see signs of inattention, hyperactivity, and impulsivity in their toddler long before the child enters school. The child may lose interest in playing a game or watching a TV show, or may run around completely out of control. But because children mature at different rates and are very different in personality, temperament, and energy levels, it’s useful to get an expert’s opinion of whether the behavior is appropriate for the child’s age. Parents can ask their child’s pediatrician, or a child psychologist or psychiatrist, to assess whether their toddler has an attention deficit hyperactivity disorder or is, more likely at this age, just immature or unusually exuberant.
ADHD may be suspected by a parent or caretaker or may go unnoticed until the child runs into problems at school. Given that ADHD tends to affect functioning most strongly in school, sometimes the teacher is the first to recognize that a child is hyperactive or inattentive and may point it out to the parents and/or consult with the school psychologist. Because teachers work with many children, they come to know how “average” children behave in learning situations that require attention and self-control. However, teachers sometimes fail to notice the needs of children who may be more inattentive and passive yet who are quiet and cooperative, such as those with the predominantly inattentive form of ADHD.
Professionals Who Make the Diagnosis
If ADHD is suspected, to whom can the family turn? What kinds of specialists do they need?
Ideally, the diagnosis should be made by a professional in your area with training in ADHD or in the diagnosis of mental disorders. Child psychiatrists and psychologists, developmental/behavioral pediatricians, or behavioral neurologists are those most often trained in differential diagnosis. Clinical social workers may also have such training.
The family can start by talking with the child’s pediatrician or their family doctor. Some pediatricians may do the assessment themselves, but often they refer the family to an appropriate mental health specialist they know and trust. In addition, state and local agencies that serve families and children, as well as some of the volunteer organizations listed at the end of this document, can help identify appropriate specialists.
| Specialty | Can Diagnose ADHD | Can prescribe medication, if needed | Provides counseling or training |
| Psychiatrists | yes | yes | yes |
| Psychologists | yes | yes* | yes |
| Pediatricians or Family Physicians | yes | yes | no |
| Neurologists | yes | yes | no |
| Clinical Social workers | yes | no | yes |
* As of October 2006,
Knowing the differences in qualifications and services can help the family choose someone who can best meet their needs. There are several types of specialists qualified to diagnose and treat ADHD. Child psychiatrists are doctors who specialize in diagnosing and treating childhood mental and behavioral disorders. A psychiatrist can provide therapy and prescribe any needed medications. Child psychologists are also qualified to diagnose and treat ADHD. They can provide therapy for the child and help the family develop ways to deal with the disorder. But psychologists are not medical doctors and must rely on the child’s physician to do medical exams and prescribe medication. Neurologists, doctors who work with disorders of the brain and nervous system, can also diagnose ADHD and prescribe medicines. But unlike psychiatrists and psychologists, neurologists usually do not provide therapy for the emotional aspects of the disorder.
Within each specialty, individual doctors and mental health professionals differ in their experiences with ADHD. So in selecting a specialist, it’s important to find someone with specific training and experience in diagnosing and treating the disorder.
Whatever the specialist’s expertise, his or her first task is to gather information that will rule out other possible reasons for the child’s behavior. Among possible causes of ADHD-like behavior are the following:
- A sudden change in the child’s life—the death of a parent or grandparent; parents’ divorce; a parent’s job loss
- Undetected seizures, such as in petit mal or temporal lobe seizures
- A middle ear infection that causes intermittent hearing problems
- Medical disorders that may affect brain functioning
- Underachievement caused by learning disability
- Anxiety or depression.
Ideally, in ruling out other causes, the specialist checks the child’s school and medical records. There may be a school record of hearing or vision problems, since most schools automatically screen for these. The specialist tries to determine whether the home and classroom environments are unusually stressful or chaotic, and how the child’s parents and teachers deal with the child.
Next the specialist gathers information on the child’s ongoing behavior in order to compare these behaviors to the symptoms and diagnostic criteria listed in the DSM-IV-TR. This also involves talking with the child and, if possible, observing the child in class and other settings.
The child’s teachers, past and present, are asked to rate their observations of the child’s behavior on standardized evaluation forms, known as behavior rating scales, to compare the child’s behavior to that of other children the same age. While rating scales might seem overly subjective, teachers often get to know so many children that their judgment of how a child compares to others is usually a reliable and valid measure.
The specialist interviews the child’s teachers and parents, and may contact other people who know the child well, such as coaches or baby-sitters. Parents are asked to describe their child’s behavior in a variety of situations. They may also fill out a rating scale to indicate how severe and frequent the behaviors seem to be.
In most cases, the child will be evaluated for social adjustment and mental health. Tests of intelligence and learning achievement may be given to see if the child has a learning disability and whether the disability is in one or more subjects.
In looking at the results of these various sources of information, the specialist pays special attention to the child’s behavior during situations that are the most demanding of self-control, as well as noisy or unstructured situations such as parties, or during tasks that require sustained attention, like reading, working math problems, or playing a board game. Behavior during free play or while getting individual attention is given less importance in the evaluation. In such situations, most children with ADHD are able to control their behavior and perform better than in more restrictive situations.
The specialist then pieces together a profile of the child’s behavior. Which ADHD-like behaviors listed in the most recent DSM does the child show? How often? In what situations? How long has the child been doing them? How old was the child when the problem started? Are the behavior problems relatively chronic or enduring or are they periodic in nature? Are the behaviors seriously interfering with the child’s friendships, school activities, home life, or participation in community activities? Does the child have any other related problems? The answers to these questions help identify whether the child’s hyperactivity, impulsivity, and inattention are significant and long-standing. If so, the child may be diagnosed with ADHD.
A correct diagnosis often resolves confusion about the reasons for the child’s problems that lets parents and child move forward in their lives with more accurate information on what is wrong and what can be done to help. Once the disorder is diagnosed, the child and family can begin to receive whatever combination of educational, medical, and emotional help they need. This may include providing recommendations to school staff, seeking out a more appropriate classroom setting, selecting the right medication, and helping parents to manage their child’s behavior.
What Causes ADHD?
One of the first questions a parent will have is “Why? What went wrong?” “Did I do something to cause this?” There is little compelling evidence at this time that ADHD can arise purely from social factors or child-rearing methods. Most substantiated causes appear to fall in the realm of neurobiology and genetics. This is not to say that environmental factors may not influence the severity of the disorder, and especially the degree of impairment and suffering the child may experience, but that such factors do not seem to give rise to the condition by themselves.
The parents’ focus should be on looking forward and finding the best possible way to help their child. Scientists are studying causes in an effort to identify better ways to treat, and perhaps someday, to prevent ADHD. They are finding more and more evidence that ADHD does not stem from the home environment, but from biological causes. Knowing this can remove a huge burden of guilt from parents who might blame themselves for their child’s behavior.
Over the last few decades, scientists have come up with possible theories about what causes ADHD. Some of these theories have led to dead ends, some to exciting new avenues of investigation.
Environmental Agents
Studies have shown a possible correlation between the use of cigarettes and alcohol during pregnancy and risk for ADHD in the offspring of that pregnancy. As a precaution, it is best during pregnancy to refrain from both cigarette and alcohol use.
Another environmental agent that may be associated with a higher risk of ADHD is high levels of lead in the bodies of young preschool children. Since lead is no longer allowed in paint and is usually found only in older buildings, exposure to toxic levels is not as prevalent as it once was. Children who live in old buildings in which lead still exists in the plumbing or in lead paint that has been painted over may be at risk.
Brain Injury
One early theory was that attention disorders were caused by brain injury. Some children who have suffered accidents leading to brain injury may show some signs of behavior similar to that of ADHD, but only a small percentage of children with ADHD have been found to have suffered a traumatic brain injury.
Food Additives and Sugar
It has been suggested that attention disorders are caused by refined sugar or food additives, or that symptoms of ADHD are exacerbated by sugar or food additives. In 1982, the National Institutes of Health held a scientific consensus conference to discuss this issue. It was found that diet restrictions helped about 5 percent of children with ADHD, mostly young children who had food allergies.3 A more recent study on the effect of sugar on children, using sugar one day and a sugar substitute on alternate days, without parents, staff, or children knowing which substance was being used, showed no significant effects of the sugar on behavior or learning.4
In another study, children whose mothers felt they were sugar-sensitive were given aspartame as a substitute for sugar. Half the mothers were told their children were given sugar, half that their children were given aspartame. The mothers who thought their children had received sugar rated them as more hyperactive than the other children and were more critical of their behavior.5
Genetics
Attention disorders often run in families, so there are likely to be genetic influences. Studies indicate that 25 percent of the close relatives in the families of ADHD children also have ADHD, whereas the rate is about 5 percent in the general population.6 Many studies of twins now show that a strong genetic influence exists in the disorder.7
Researchers continue to study the genetic contribution to ADHD and to identify the genes that cause a person to be susceptible to ADHD. Since its inception in 1999, the Attention-Deficit Hyperactivity Disorder Molecular Genetics Network has served as a way for researchers to share findings regarding possible genetic influences on ADHD.8
Recent Studies on Causes of ADHD
Some knowledge of the structure of the brain is helpful in understanding the research scientists are doing in searching for a physical basis for attention deficit hyperactivity disorder. One part of the brain that scientists have focused on in their search is the frontal lobes of the cerebrum. The frontal lobes allow us to solve problems, plan ahead, understand the behavior of others, and restrain our impulses. The two frontal lobes, the right and the left, communicate with each other through the corpus callosum, (nerve fibers that connect the right and left frontal lobes).
The basal ganglia are the interconnected gray masses deep in the cerebral hemisphere that serve as the connection between the cerebrum and the cerebellum and, with the cerebellum, are responsible for motor coordination. The cerebellum is divided into three parts. The middle part is called the vermis.
All of these parts of the brain have been studied through the use of various methods for seeing into or imaging the brain. These methods include functional magnetic resonance imaging (fMRI) positron emission tomography (PET), and single photon emission computed tomography (SPECT). The main or central psychological deficits in those with ADHD have been linked through these studies. By 2002 the researchers in the NIMH Child Psychiatry Branch had studied 152 boys and girls with ADHD, matched with 139 age- and gender-matched controls without ADHD. The children were scanned at least twice, some as many as four times over a decade. As a group, the ADHD children showed 3-4 percent smaller brain volumes in all regions—the frontal lobes, temporal gray matter, caudate nucleus, and cerebellum.
This study also showed that the ADHD children who were on medication had a white matter volume that did not differ from that of controls. Those never-medicated patients had an abnormally small volume of white matter. The white matter consists of fibers that establish long-distance connections between brain regions. It normally thickens as a child grows older and the brain matures.9
Although this long-term study used MRI to scan the children’s brains, the researchers stressed that MRI remains a research tool and cannot be used to diagnose ADHD in any given child. This is true for other neurological methods of evaluating the brain, such as PET and SPECT.
Disorders that Sometimes Accompany ADHD
Learning Disabilities
Many children with ADHD—approximately 20 to 30 percent—also have a specific learning disability (LD).10 In preschool years, these disabilities include difficulty in understanding certain sounds or words and/or difficulty in expressing oneself in words. In school age children, reading or spelling disabilities, writing disorders, and arithmetic disorders may appear. A type of reading disorder, dyslexia, is quite widespread.
Tourette Syndrome
A very small proportion of people with ADHD have a neurological disorder called Tourette syndrome. People with Tourette syndrome have various nervous tics and repetitive mannerisms, such as eye blinks, facial twitches, or grimacing. Others may clear their throats frequently, snort, sniff, or bark out words. These behaviors can be controlled with medication. While very few children have this syndrome, many of the cases of Tourette syndrome have associated ADHD. In such cases, both disorders often require treatment that may include medications.
Oppositional Defiant Disorder
As many as one-third to one-half of all children with ADHD—mostly boys—have another condition, known as oppositional defiant disorder (ODD). These children are often defiant, stubborn, non-compliant, have outbursts of temper, or become belligerent. They argue with adults and refuse to obey.
Conduct Disorder
About 20 to 40 percent of ADHD children may eventually develop conduct disorder (CD), a more serious pattern of antisocial behavior. These children frequently lie or steal, fight with or bully others, and are at a real risk of getting into trouble at school or with the police. They violate the basic rights of other people, are aggressive toward people and/or animals, destroy property, break into people’s homes, commit thefts, carry or use weapons, or engage in vandalism. These children or teens are at greater risk for substance use experimentation, and later dependence and abuse. They need immediate help.
Anxiety and Depression
Some children with ADHD often have co-occurring anxiety or depression. If the anxiety or depression is recognized and treated, the child will be better able to handle the problems that accompany ADHD. Conversely, effective treatment of ADHD can have a positive impact on anxiety as the child is better able to master academic tasks.
Bipolar Disorder
There are no accurate statistics on how many children with ADHD also have bipolar disorder. Differentiating between ADHD and bipolar disorder in childhood can be difficult. In its classic form, bipolar disorder is characterized by mood cycling between periods of intense highs and lows. But in children, bipolar disorder often seems to be a rather chronic mood dysregulation with a mixture of elation, depression, and irritability. Furthermore, there are some symptoms that can be present both in ADHD and bipolar disorder, such as a high level of energy and a reduced need for sleep. Of the symptoms differentiating children with ADHD from those with bipolar disorder, elated mood and grandiosity of the bipolar child are distinguishing characteristics.11
The Treatment of ADHD
Every family wants to determine what treatment will be most effective for their child. This question needs to be answered by each family in consultation with their health care professional. To help families make this important decision, the National Institute of Mental Health (NIMH) has funded many studies of treatments for ADHD and has conducted the most intensive study ever undertaken for evaluating the treatment of this disorder. This study is known as the Multimodal Treatment Study of Children with Attention Deficit Hyperactivity Disorder (MTA).12 The NIMH is now conducting a clinical trial for younger children ages 3 to 5.5 years (Treatment of ADHD in Preschool-Age Children).
The Multimodal Treatment Study of Children with Attention Deficit Hyperactivity Disorder
The MTA study included 579 (95-98 at each of 6 treatment sites) elementary school boys and girls with ADHD, who were randomly assigned to one of four treatment programs: (1) medication management alone; (2) behavioral treatment alone; (3) a combination of both; or (4) routine community care. In each of the study sites, three groups were treated for the first 14 months in a specified protocol and the fourth group was referred for community treatment of the parents’ choosing. All of the children were reassessed regularly throughout the study period. An essential part of the program was the cooperation of the schools, including principals and teachers. Both teachers and parents rated the children on hyperactivity, impulsivity, and inattention, and symptoms of anxiety and depression, as well as social skills.
The children in two groups (medication management alone and the combination treatment) were seen monthly for one-half hour at each medication visit. During the treatment visits, the prescribing physician spoke with the parent, met with the child, and sought to determine any concerns that the family might have regarding the medication or the child’s ADHD-related difficulties. The physicians, in addition, sought input from the teachers on a monthly basis. The physicians in the medication-only group did not provide behavioral therapy but did advise the parents when necessary concerning any problems the child might have.
In the behavior treatment-only group, families met up to 35 times with a behavior therapist, mostly in group sessions. These therapists also made repeated visits to schools to consult with children’s teachers and to supervise a special aide assigned to each child in the group. In addition, children attended a special 8-week summer treatment program where they worked on academic, social, and sports skills, and where intensive behavioral therapy was delivered to assist children in improving their behavior.
Children in the combined therapy group received both treatments, that is, all the same assistance that the medication-only received, as well as all of the behavior therapy treatments.
In routine community care, the children saw the community-treatment doctor of their parents’ choice one to two times per year for short periods of time. Also, the community-treatment doctor did not have any interaction with the teachers.
The results of the study indicated that long-term combination treatments and the medication-management alone were superior to intensive behavioral treatment and routine community treatment. And in some areas—anxiety, academic performance, oppositionality, parent-child relations, and social skills—the combined treatment was usually superior. Another advantage of combined treatment was that children could be successfully treated with lower doses of medicine, compared with the medication-only group.
Treatment of Attention Deficit Hyperactivity Disorder in Preschool-Age Children (PATS)
Because many children in the preschool years are diagnosed with ADHD and are given medication, it is important to know the safety and efficacy of such treatment. The NIMH is sponsoring an ongoing multi-site study, “Preschool ADHD Treatment Study” (PATS). It is the first major effort to examine the safety and efficacy of a stimulant, methylphenidate, for ADHD in this age group. The PATS study uses a randomized, placebo-controlled, double-blind design. Children ages 3 to 5 who have severe and persistent symptoms of ADHD that impair their functioning are eligible for this study. To avoid using medications at such an early age, all children who enter the study are first treated with behavioral therapy. Only children who do not show sufficient improvement with behavior therapy are considered for the medication part of the study. The study is being conducted at New York State Psychiatric Institute,
Which Treatment Should My Child Have?
For children with ADHD, no single treatment is the answer for every child. A child may sometimes have undesirable side effects to a medication that would make that particular treatment unacceptable. And if a child with ADHD also has anxiety or depression, a treatment combining medication and behavioral therapy might be best. Each child’s needs and personal history must be carefully considered.
Medications
For decades, medications have been used to treat the symptoms of ADHD.
The medications that seem to be the most effective are a class of drugs known as stimulants. Following is a list of the stimulants, their trade (or brand) names, and their generic names. “Approved age” means that the drug has been tested and found safe and effective in children of that age.
| Trade Name | Generic Name | Approved Age |
| Adderall | amphetamine | 3 and older |
| Concerta | methylphenidate | 6 and older |
| Cylert* | pemoline | 6 and older |
| Dexedrine | dextroamphetamine | 3 and older |
| Dextrostat | dextroamphetamine | 3 and older |
| Focalin | dexmethylphenidate | 6 and older |
| Metadate ER | methylphenidate | 6 and older |
| Metadate CD | methylphenidate | 6 and older |
| Ritalin | methylphenidate | 6 and older |
| Ritalin SR | methylphenidate | 6 and older |
| Ritalin LA | methylphenidate | 6 and older |
| *Because of its potential for serious side effects affecting the liver, Cylert should not ordinarily be considered as first-line drug therapy for ADHD. | ||
The U.S. Food and Drug Administration (FDA) recently approved a medication for ADHD that is not a stimulant. The medication, Strattera®, or atomoxetine, works on the neurotransmitter norepinephrine, whereas the stimulants primarily work on dopamine. Both of theses neurotransmitters are believed to play a role in ADHD. More studies will need to be done to contrast Strattera with the medications already available, but the evidence to date indicates that over 70 percent of children with ADHD given Strattera manifest significant improvement in their symptoms.
Some people get better results from one medication, some from another. It is important to work with the prescribing physician to find the right medication and the right dosage. For many people, the stimulants dramatically reduce their hyperactivity and impulsivity and improve their ability to focus, work, and learn. The medications may also improve physical coordination, such as that needed in handwriting and in sports.
The stimulant drugs, when used with medical supervision, are usually considered quite safe. Stimulants do not make the child feel “high,” although some children say they feel different or funny. Such changes are usually very minor. Although some parents worry that their child may become addicted to the medication, to date there is no convincing evidence that stimulant medications, when used for treatment of ADHD, cause drug abuse or dependence. A review of all long-term studies on stimulant medication and substance abuse, conducted by researchers at
The stimulant drugs come in long- and short-term forms. The newer sustained-release stimulants can be taken before school and are long-lasting so that the child does not need to go to the school nurse every day for a pill. The doctor can discuss with the parents the child’s needs and decide which preparation to use and whether the child needs to take the medicine during school hours only or in the evening and on weekends too.
If the child does not show symptom improvement after taking a medication for a week, the doctor may try adjusting the dosage. If there is still no improvement, the child may be switched to another medication. About one out of ten children is not helped by a stimulant medication. Other types of medication may be used if stimulants don’t work or if the ADHD occurs with another disorder. Antidepressants and other medications can help control accompanying depression or anxiety.
Sometimes the doctor may prescribe for a young child a medication that has been approved by the FDA for use in adults or older children. This use of the medication is called “off label.” Many of the newer medications that are proving helpful for child mental disorders are prescribed off label because only a few of them have been systematically studied for safety and efficacy in children. Medications that have not undergone such testing are dispensed with the statement that “safety and efficacy have not been established in pediatric patients.”
MENTAL RETARDATION
Alternative terms
The term "retardation" was originally a euphemism to replace previous designations such as "idiot", "imbecile," and "moron", which were originally scientific terms that acquired pejorative connotations in popular discourse over time. The term "mental retardation" has itself now acquired pejorative and shameful connotations over the last few decades due to the euphemism treadmill, leading to still further euphemisms such as "mentally handicapped" or "special".
- In North America the broad term developmental delay has become an increasingly preferred synonym by many parents and direct support professionals. Elsewhere, however, developmental delay is generally used to imply that appropriate intervention will improve or completely eliminate the condition, allowing for "catching up." Importantly, this term carries the emotionally powerful idea that the individual's current difficulties are likely to be temporary.
- Developmental disability is preferred by most physicians, but can also refer to any other physical or psychiatric delay, such as delayed puberty.
- The phrase intellectual disability is increasingly being used as a synonym for people with significantly below-average IQ.[1] These terms are sometimes used as a means of separating general intellectual limitations from specific, limited deficits as well as indicating that it is not an emotional or psychological disability. Intellectual disability is also used to describe the outcome of traumatic brain injury or lead poisoning or dementing conditions such as Alzheimer's disease. It is not specific to congenital conditions like Down syndrome.
The American Association on Mental Retardation continued to use the term mental retardation until 2006.[2] In June 2006 its members voted to change the name of the organisation to the "American Association on Intellectual and Developmental Disabilities," rejecting the options to become the AAID or AADD. Part of the rationale for the double name was that many members worked with people with pervasive developmental disorders, most of whom are not mentally retarded.[3]
In the
In England and Wales the Mental Health Act 1983 defines "mental impairment" and "severe mental impairment" as "a state of arrested or incomplete development of mind which includes significant/severe impairment of intelligence and social functioning and is associated with abnormally aggressive or seriously irresponsible conduct on the part of the person concerned."[4] As behavior is involved, these are not necessarily permanent conditions: they are defined for the purpose of authorising detention in hospital or guardianship. However, English statute law uses "mental impairment" elsewhere in a less well-defined manner—e.g. to allow exemption from taxes—implying that mental retardation without any behavioural problems is what is meant. Mental Impairment is scheduled to be removed from the Act when it is amended in 2008.
Signs
Children with developmental disabilities may learn to sit up, to crawl, or to walk later than other children, or they may learn to talk later. Both adults and children with intellectual disabilities may also exhibit the following symptoms:
- have trouble speaking
- find it hard to remember things
- have trouble understanding social rules
- have trouble discerning cause and effect
- have trouble solving problems
- have trouble thinking logically.
- persistence of infantile behaviour.
In early childhood mild disability (IQ 60–70) may not be obvious, and may not be diagnosed until children begin school. Even when poor academic performance is recognized, it may take expert assessment to distinguish mild mental disability from learning disability or behavior problems. As they become adults, many people can live independently and may be considered by others in their community as "slow" rather than retarded.
Moderate disability (IQ 50–60) is nearly always obvious within the first years of life. These people will encounter difficulty in school, at home, and in the community. In many cases they will need to join special, usually separate, classes in school, but they can still progress to become functioning members of society. As adults they may live with their parents, in a supportive group home, or even semi-independently with significant supportive services to help them, for example, manage their finances.
Among people with intellectual disabilities, only about one in eight will score below 50 on IQ tests. A person with a more severe disability will need more intensive support and supervision his or her entire life.
The limitations of cognitive function will cause a child to learn and develop more slowly than a typical child. Children may take longer to learn to speak, walk, and take care of their personal needs such as dressing or eating. Learning will take them longer, require more repetition, and there may be some things they cannot learn. The extent of the limits of learning is a function of the severity of the disability.
Nevertheless, virtually every child is able to learn, develop, and grow to some extent.
Diagnosis
According to the latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV),[5] there are three criteria before a person is considered to have a developmental disability: an IQ below 70, significant limitations in two or more areas of adaptive behavior (i.e., ability to function at age level in an ordinary environment), and evidence that the limitations became apparent in childhood.
It is formally diagnosed by professional assessment of intelligence and adaptive behavior.
IQ below 70
IQ tests were created as an attempt to measure a person's abilities in several areas, including language, numeracy and problem-solving. The average Caucasian score is 100. People with a score below 75 will often, but not always, have difficulties with daily living skills. Since factors other than mental ability (depression, anxiety, etc.) can yield low IQ scores, it is important for the evaluator to rule them out prior to concluding that measured IQ is "significantly below average".
The following ranges, based on the Wechsler Adult Intelligence Scale (WAIS), are in standard use today:
| Class | IQ |
| Profound mental retardation | Below 20 |
| Severe mental retardation | 20–34 |
| Moderate mental retardation | 35–49 |
| Mild mental retardation | 50–69 |
| Borderline mental retardation | 70–79 |
Significant limitations in two or more areas of adaptive behavior
Adaptive behavior, or adaptive functioning, refers to the skills needed to live independently (or at the minimally acceptable level for age). To assess adaptive behavior, professionals compare the functional abilities of a child to those of other children of similar age. To measure adaptive behavior, professionals use structured interviews, with which they systematically elicit information about the person's functioning in the community from someone who knows them well. There are many adaptive behavior scales, and accurate assessment of the quality of someone's adaptive behavior requires clinical judgment as well. Certain skills are important to adaptive behavior, such as:
- daily living skills, such as getting dressed, using the bathroom, and feeding oneself;
- communication skills, such as understanding what is said and being able to answer;
- social skills with peers, family members, spouses, adults, and others.
Evidence that the limitations became apparent in childhood
This third condition is used to distinguish it from dementing conditions such as Alzheimer's disease or is due to traumatic injuries that damaged the brain.
Causes
Down syndrome, fetal alcohol syndrome and Fragile X syndrome are the three most common inborn causes. However, doctors have found many other causes. The most common are:
- Genetic conditions. Sometimes disability is caused by abnormal genes inherited from parents, errors when genes combine, or other reasons. Examples of genetic conditions include Down syndrome, Fragile X syndrome, Phelan-McDermid syndrome (22q13del), Mowat-Wilson syndrome and phenylketonuria (PKU).
- Problems during pregnancy. Mental disability can result when the fetus does not develop inside the mother properly. For example, there may be a problem with the way the fetus's cells divide as it grows. A woman who drinks alcohol (see fetal alcohol syndrome) or gets an infection like rubella during pregnancy may also have a baby with mental disability.
- Problems at birth. If a baby has problems during labor and birth, such as not getting enough oxygen, he or she may have developmental disability due to brain damage.
- Health problems. Diseases like whooping cough, measles, or meningitis can cause mental disability. It can also be caused by not getting enough medical care, or by being exposed to poisons like lead or mercury.
- Iodine deficiency, affecting approximately 2 billion people worldwide, is the leading preventable cause of mental disability in areas of the developing world where iodine deficiency is endemic. Iodine deficiency also causes goiter, an enlargement of the thyroid gland. More common than full-fledged cretinism, as retardation caused by severe iodine deficiency is called, is mild impairment of intelligence. Certain areas of the world due to natural deficiency and governmental inaction are severely affected. India is the most outstanding, with 500 million suffering from deficiency, 54 million from goiter, and 2 million from cretinism. Among other nations affected by iodine deficiency, China and Kazakhstan have begun taking action, whereas Russia has not. [6]
- Malnutrition is a common cause of reduced intelligence in parts of the world affected by famine, such as Ethiopia. [7]
- The use of forceps during birth can lead to mental retardation in an otherwise normal child. They can fracture the skull and cause brain damage.
- Institutionalisation at a young age can cause mental retardation in normal children.
- Sensory deprivation in the form of severe environmental restrictions (such as being locked in a basement or under a staircase), prolonged isolation, or severe atypical parent-child interactions.
Treatment and assistance
By most definitions mental retardation is more accurately considered a disability rather than a disease. MR can be distinguished in many ways from mental illness, such as schizophrenia or depression. Currently, there is no "cure" for an established disability, though with appropriate support and teaching, most individuals can learn to do many things.
There are thousands of agencies in the United States that provide assistance for people with developmental disabilities. They include state-run, for-profit, and non-profit, privately run agencies. Within one agency there could be departments that include fully staffed residential homes, day habilitation programs that approximate schools, workshops wherein people with disabilities can obtain jobs, programs that assist people with developmental disabilities in obtaining jobs in the community, programs that provide support for people with developmental disabilities who have their own apartments, programs that assist them with raising their children, and many more. The Burton Blatt Institute at Syracuse University works to advance the civic, economic, and social participation of people with disabilities. There are also many agencies and programs for parents of children with developmental disabilities.
Although there is no specific medication for mental retardation, many people with developmental disabilities have further medical complications and may take several medications. Beyond that there are specific programs that people with developmental disabilities can take part in wherein they learn basic life skills. These "goals" may take a much longer amount of time for them to accomplish, but the ultimate goal is independence. This may be anything from independence in tooth brushing to an independent residence. People with developmental disabilities learn throughout their lives and can obtain many new skills even late in life with the help of their families, caregivers, clinicians and the people who coordinate the efforts of all of these people.
Autism Spectrum Disorders (Pervasive Developmental Disorders)
Not until the middle of the twentieth century was there a name for a disorder that now appears to affect an estimated 3.4 every 1,000 children ages 3-10, a disorder that causes disruption in families and unfulfilled lives for many children. In 1943 Dr. Leo Kanner of the
The autism spectrum disorders can often be reliably detected by the age of 3 years, and in some cases as early as 18 months.2 Studies suggest that many children eventually may be accurately identified by the age of 1 year or even younger. The appearance of any of the warning signs of ASD is reason to have a child evaluated by a professional specializing in these disorders.
Parents are usually the first to notice unusual behaviors in their child. In some cases, the baby seemed “different” from birth, unresponsive to people or focusing intently on one item for long periods of time. The first signs of an ASD can also appear in children who seem to have been developing normally. When an engaging, babbling toddler suddenly becomes silent, withdrawn, self-abusive, or indifferent to social overtures, something is wrong. Research has shown that parents are usually correct about noticing developmental problems, although they may not realize the specific nature or degree of the problem.
The pervasive developmental disorders, or autism spectrum disorders, range from a severe form, called autistic disorder, to a milder form, Asperger syndrome. If a child has symptoms of either of these disorders, but does not meet the specific criteria for either, the diagnosis is called pervasive developmental disorder not otherwise specified (PDD-NOS). Other rare, very severe disorders that are included in the autism spectrum disorders are Rett syndrome and childhood disintegrative disorder. This brochure will focus on classic autism, PDD-NOS, and Asperger syndrome, with brief descriptions of Rett syndrome and childhood disintegrative disorder on the following page.
Rare Autism Spectrum Disorders
Rett Syndrome
Rett syndrome is relatively rare, affecting almost exclusively females, one out of 10,000 to 15,000. After a period of normal development, sometime between 6 and 18 months, autism-like symptoms begin to appear. The little girl's mental and social development regresses—she no longer responds to her parents and pulls away from any social contact. If she has been talking, she stops; she cannot control her feet; she wrings her hands. Some of the problems associated with Rett syndrome can be treated. Physical, occupational, and speech therapy can help with problems of coordination, movement, and speech.
Scientists sponsored by the National Institute of Child Health and Human Development have discovered that a mutation in the sequence of a single gene can cause Rett syndrome. This discovery may help doctors slow or stop the progress of the syndrome. It may also lead to methods of screening for Rett syndrome, thus enabling doctors to start treating these children much sooner, and improving the quality of life these children experience.*
Childhood Disintegrative Disorder
Very few children who have an autism spectrum disorder (ASD) diagnosis meet the criteria for childhood disintegrative disorder (CDD). An estimate based on four surveys of ASD found fewer than two children per 100,000 with ASD could be classified as having CDD. This suggests that CDD is a very rare form of ASD. It has a strong male preponderance.** Symptoms may appear by age 2, but the average age of onset is between 3 and 4 years. Until this time, the child has age-appropriate skills in communication and social relationships. The long period of normal development before regression helps differentiate CDD from Rett syndrome.
The loss of such skills as vocabulary are more dramatic in CDD than they are in classical autism. The diagnosis requires extensive and pronounced losses involving motor, language, and social skills.*** CDD is also accompanied by loss of bowel and bladder control and oftentimes seizures and a very low IQ.
*Rett syndrome. NIH Publication No. 01-4960.
**Frombonne E. Prevalence of childhood disintegrative disorder. Autism, 2002; 6(2): 149-157.
***Volkmar RM and Rutter M. Childhood disintegrative disorder: Results of the DSM-IV autism field trial. Journal of the
What Are the Autism Spectrum Disorders?
What Are the Autism Spectrum Disorders?
The autism spectrum disorders are more common in the pediatric population than are some better known disorders such as diabetes, spinal bifida, or Down syndrome.2 Prevalence studies have been done in several states and also in the
All children with ASD demonstrate deficits in 1) social interaction, 2) verbal and nonverbal communication, and 3) repetitive behaviors or interests. In addition, they will often have unusual responses to sensory experiences, such as certain sounds or the way objects look. Each of these symptoms runs the gamut from mild to severe. They will present in each individual child differently. For instance, a child may have little trouble learning to read but exhibit extremely poor social interaction. Each child will display communication, social, and behavioral patterns that are individual but fit into the overall diagnosis of ASD.
Children with ASD do not follow the typical patterns of child development. In some children, hints of future problems may be apparent from birth. In most cases, the problems in communication and social skills become more noticeable as the child lags further behind other children the same age. Some other children start off well enough. Oftentimes between 12 and 36 months old, the differences in the way they react to people and other unusual behaviors become apparent. Some parents report the change as being sudden, and that their children start to reject people, act strangely, and lose language and social skills they had previously acquired. In other cases, there is a plateau, or leveling, of progress so that the difference between the child with autism and other children the same age becomes more noticeable.
ASD is defined by a certain set of behaviors that can range from the very mild to the severe. The following possible indicators of ASD were identified on the Public Health Training Network Webcast, Autism Among Us.4
Possible Indicators of Autism Spectrum Disorders
- Does not babble, point, or make meaningful gestures by 1 year of age
- Does not speak one word by 16 months
- Does not combine two words by 2 years
- Does not respond to name
- Loses language or social skills
Some Other Indicators
- Poor eye contact
- Doesn't seem to know how to play with toys
- Excessively lines up toys or other objects
- Is attached to one particular toy or object
- Doesn't smile
- At times seems to be hearing impaired
Social Symptoms
From the start, typically developing infants are social beings. Early in life, they gaze at people, turn toward voices, grasp a finger, and even smile.
In contrast, most children with ASD seem to have tremendous difficulty learning to engage in the give-and-take of everyday human interaction. Even in the first few months of life, many do not interact and they avoid eye contact. They seem indifferent to other people, and often seem to prefer being alone. They may resist attention or passively accept hugs and cuddling. Later, they seldom seek comfort or respond to parents' displays of anger or affection in a typical way. Research has suggested that although children with ASD are attached to their parents, their expression of this attachment is unusual and difficult to “read.” To parents, it may seem as if their child is not attached at all. Parents who looked forward to the joys of cuddling, teaching, and playing with their child may feel crushed by this lack of the expected and typical attachment behavior.
Children with ASD also are slower in learning to interpret what others are thinking and feeling. Subtle social cues—whether a smile, a wink, or a grimace—may have little meaning. To a child who misses these cues, “Come here” always means the same thing, whether the speaker is smiling and extending her arms for a hug or frowning and planting her fists on her hips. Without the ability to interpret gestures and facial expressions, the social world may seem bewildering. To compound the problem, people with ASD have difficulty seeing things from another person's perspective. Most 5-year-olds understand that other people have different information, feelings, and goals than they have. A person with ASD may lack such understanding. This inability leaves them unable to predict or understand other people's actions.
Although not universal, it is common for people with ASD also to have difficulty regulating their emotions. This can take the form of “immature” behavior such as crying in class or verbal outbursts that seem inappropriate to those around them. The individual with ASD might also be disruptive and physically aggressive at times, making social relationships still more difficult. They have a tendency to “lose control,” particularly when they're in a strange or overwhelming environment, or when angry and frustrated. They may at times break things, attack others, or hurt themselves. In their frustration, some bang their heads, pull their hair, or bite their arms.
Communication Difficulties
By age 3, most children have passed predictable milestones on the path to learning language; one of the earliest is babbling. By the first birthday, a typical toddler says words, turns when he hears his name, points when he wants a toy, and when offered something distasteful, makes it clear that the answer is “no.”
Some children diagnosed with ASD remain mute throughout their lives. Some infants who later show signs of ASD coo and babble during the first few months of life, but they soon stop. Others may be delayed, developing language as late as age
Those who do speak often use language in unusual ways. They seem unable to combine words into meaningful sentences. Some speak only single words, while others repeat the same phrase over and over. Some ASD children parrot what they hear, a condition called echolalia. Although many children with no ASD go through a stage where they repeat what they hear, it normally passes by the time they are 3.
Some children only mildly affected may exhibit slight delays in language, or even seem to have precocious language and unusually large vocabularies, but have great difficulty in sustaining a conversation. The “give and take” of normal conversation is hard for them, although they often carry on a monologue on a favorite subject, giving no one else an opportunity to comment. Another difficulty is often the inability to understand body language, tone of voice, or “phrases of speech.” They might interpret a sarcastic expression such as “Oh, that's just great” as meaning it really IS great.
While it can be hard to understand what ASD children are saying, their body language is also difficult to understand. Facial expressions, movements, and gestures rarely match what they are saying. Also, their tone of voice fails to reflect their feelings. A high-pitched, sing-song, or flat, robot-like voice is common. Some children with relatively good language skills speak like little adults, failing to pick up on the “kid-speak” that is common in their peers.
Without meaningful gestures or the language to ask for things, people with ASD are at a loss to let others know what they need. As a result, they may simply scream or grab what they want. Until they are taught better ways to express their needs, ASD children do whatever they can to get through to others. As people with ASD grow up, they can become increasingly aware of their difficulties in understanding others and in being understood. As a result they may become anxious or depressed.
Repetitive Behaviors
Although children with ASD usually appear physically normal and have good muscle control, odd repetitive motions may set them off from other children. These behaviors might be extreme and highly apparent or more subtle. Some children and older individuals spend a lot of time repeatedly flapping their arms or walking on their toes. Some suddenly freeze in position.
As children, they might spend hours lining up their cars and trains in a certain way, rather than using them for pretend play. If someone accidentally moves one of the toys, the child may be tremendously upset. ASD children need, and demand, absolute consistency in their environment. A slight change in any routine—in mealtimes, dressing, taking a bath, going to school at a certain time and by the same route—can be extremely disturbing. Perhaps order and sameness lend some stability in a world of confusion.
Repetitive behavior sometimes takes the form of a persistent, intense preoccupation. For example, the child might be obsessed with learning all about vacuum cleaners, train schedules, or lighthouses. Often there is great interest in numbers, symbols, or science topics.
Problems That May Accompany ASD
Sensory problems. When children's perceptions are accurate, they can learn from what they see, feel, or hear. On the other hand, if sensory information is faulty, the child's experiences of the world can be confusing. Many ASD children are highly attuned or even painfully sensitive to certain sounds, textures, tastes, and smells. Some children find the feel of clothes touching their skin almost unbearable. Some sounds—a vacuum cleaner, a ringing telephone, a sudden storm, even the sound of waves lapping the shoreline—will cause these children to cover their ears and scream.
In ASD, the brain seems unable to balance the senses appropriately. Some ASD children are oblivious to extreme cold or pain. An ASD child may fall and break an arm, yet never cry. Another may bash his head against a wall and not wince, but a light touch may make the child scream with alarm.
Mental retardation. Many children with ASD have some degree of mental impairment. When tested, some areas of ability may be normal, while others may be especially weak. For example, a child with ASD may do well on the parts of the test that measure visual skills but earn low scores on the language subtests.
Seizures. One in four children with ASD develops seizures, often starting either in early childhood or adolescence. 5 Seizures, caused by abnormal electrical activity in the brain, can produce a temporary loss of consciousness (a “blackout”), a body convulsion, unusual movements, or staring spells. Sometimes a contributing factor is a lack of sleep or a high fever. An EEG (electroencephalogram—recording of the electric currents developed in the brain by means of electrodes applied to the scalp) can help confirm the seizure's presence.
In most cases, seizures can be controlled by a number of medicines called “anticonvulsants.” The dosage of the medication is adjusted carefully so that the least possible amount of medication will be used to be effective.
Fragile X syndrome. This disorder is the most common inherited form of mental retardation. It was so named because one part of the X chromosome has a defective piece that appears pinched and fragile when under a microscope. Fragile X syndrome affects about two to five percent of people with ASD. It is important to have a child with ASD checked for Fragile X, especially if the parents are considering having another child. For an unknown reason, if a child with ASD also has Fragile X, there is a one-in-two chance that boys born to the same parents will have the syndrome. 6 Other members of the family who may be contemplating having a child may also wish to be checked for the syndrome.
Tuberous Sclerosis. Tuberous sclerosis is a rare genetic disorder that causes benign tumors to grow in the brain as well as in other vital organs. It has a consistently strong association with ASD. One to 4 percent of people with ASD also have tuberous sclerosis.7
The Diagnosis of Autism Spectrum Disorders
Although there are many concerns about labeling a young child with an ASD, the earlier the diagnosis of ASD is made, the earlier needed interventions can begin. Evidence over the last 15 years indicates that intensive early intervention in optimal educational settings for at least 2 years during the preschool years results in improved outcomes in most young children with ASD.2
In evaluating a child, clinicians rely on behavioral characteristics to make a diagnosis. Some of the characteristic behaviors of ASD may be apparent in the first few months of a child's life, or they may appear at any time during the early years. For the diagnosis, problems in at least one of the areas of communication, socialization, or restricted behavior must be present before the age of 3. The diagnosis requires a two-stage process. The first stage involves developmental screening during “well child” check-ups; the second stage entails a comprehensive evaluation by a multidisciplinary team.8
Screening
A “well child” check-up should include a developmental screening test. If your child's pediatrician does not routinely check your child with such a test, ask that it be done. Your own observations and concerns about your child's development will be essential in helping to screen your child.8 Reviewing family videotapes, photos, and baby albums can help parents remember when each behavior was first noticed and when the child reached certain developmental milestones.
Several screening instruments have been developed to quickly gather information about a child's social and communicative development within medical settings. Among them are the Checklist of Autism in Toddlers (CHAT),9 the modified Checklist for Autism in Toddlers (M-CHAT),10 the Screening Tool for Autism in Two-Year-Olds (STAT),11 and the Social Communication Questionnaire (SCQ)12 (for children 4 years of age and older).
Some screening instruments rely solely on parent responses to a questionnaire, and some rely on a combination of parent report and observation. Key items on these instruments that appear to differentiate children with autism from other groups before the age of 2 include pointing and pretend play. Screening instruments do not provide individual diagnosis but serve to assess the need for referral for possible diagnosis of ASD. These screening methods may not identify children with mild ASD, such as those with high-functioning autism or Asperger syndrome.
During the last few years, screening instruments have been devised to screen for Asperger syndrome and higher functioning autism. The Autism Spectrum Screening Questionnaire (ASSQ),13 the Australian Scale for Asperger's Syndrome,14 and the most recent, the Childhood Asperger Syndrome Test (CAST),15 are some of the instruments that are reliable for identification of school-age children with Asperger syndrome or higher functioning autism. These tools concentrate on social and behavioral impairments in children without significant language delay.
If, following the screening process or during a routine “well child” check-up, your child's doctor sees any of the possible indicators of ASD, further evaluation is indicated.
Comprehensive Diagnostic Evaluation
The second stage of diagnosis must be comprehensive in order to accurately rule in or rule out an ASD or other developmental problem. This evaluation may be done by a multidisciplinary team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals who diagnose children with ASD.
Because ASDs are complex disorders and may involve other neurological or genetic problems, a comprehensive evaluation should entail neurologic and genetic assessment, along with in-depth cognitive and language testing.8 In addition, measures developed specifically for diagnosing autism are often used. These include the Autism Diagnosis Interview-Revised (ADI-R)16 and the Autism Diagnostic Observation Schedule (ADOS-G).17 The ADI-R is a structured interview that contains over 100 items and is conducted with a caregiver. It consists of four main factors—the child's communication, social interaction, repetitive behaviors, and age-of-onset symptoms. The ADOS-G is an observational measure used to “press” for socio-communicative behaviors that are often delayed, abnormal, or absent in children with ASD.
Still another instrument often used by professionals is the Childhood Autism Rating Scale (CARS).18 It aids in evaluating the child's body movements, adaptation to change, listening response, verbal communication, and relationship to people. It is suitable for use with children over 2 years of age. The examiner observes the child and also obtains relevant information from the parents. The child's behavior is rated on a scale based on deviation from the typical behavior of children of the same age.
Two other tests that should be used to assess any child with a developmental delay are a formal audiologic hearing evaluation and a lead screening. Although some hearing loss can co-occur with ASD, some children with ASD may be incorrectly thought to have such a loss. In addition, if the child has suffered from an ear infection, transient hearing loss can occur. Lead screening is essential for children who remain for a long period of time in the oral-motor stage in which they put any and everything into their mouths. Children with an autistic disorder usually have elevated blood lead levels.8
Customarily, an expert diagnostic team has the responsibility of thoroughly evaluating the child, assessing the child's unique strengths and weaknesses, and determining a formal diagnosis. The team will then meet with the parents to explain the results of the evaluation.
Although parents may have been aware that something was not“quite righ” with their child, when the diagnosis is given, it is a devastating blow. At such a time, it is hard to stay focused on asking questions. But while members of the evaluation team are together is the best opportunity the parents will have to ask questions and get recommendations on what further steps they should take for their child. Learning as much as possible at this meeting is very important, but it is helpful to leave this meeting with the name or names of professionals who can be contacted if the parents have further questions.
Available Aids
When your child has been evaluated and diagnosed with an autism spectrum disorder, you may feel inadequate to help your child develop to the fullest extent of his or her ability. As you begin to look at treatment options and at the types of aid available for a child with a disability, you will find out that there is help for you. It is going to be difficult to learn and remember everything you need to know about the resources that will be most helpful. Write down everything. If you keep a notebook, you will have a foolproof method of recalling information. Keep a record of the doctors' reports and the evaluation your child has been given so that his or her eligibility for special programs will be documented. Learn everything you can about special programs for your child; the more you know, the more effectively you can advocate.
For every child eligible for special programs, each state guarantees special education and related services. The Individuals with Disabilities Education Act (IDEA) is a Federally mandated program that assures a free and appropriate public education for children with diagnosed learning deficits. Usually children are placed in public schools and the school district pays for all necessary services. These will include, as needed, services by a speech therapist, occupational therapist, school psychologist, social worker, school nurse, or aide.
By law, the public schools must prepare and carry out a set of instruction goals, or specific skills, for every child in a special education program. The list of skills is known as the child's Individualized Education Program (IEP). The IEP is an agreement between the school and the family on the child's goals. When your child's IEP is developed, you will be asked to attend the meeting. There will be several people at this meeting, including a special education teacher, a representative of the public schools who is knowledgeable about the program, other individuals invited by the school or by you (you may want to bring a relative, a child care provider, or a supportive close friend who knows your child well). Parents play an important part in creating the program, as they know their child and his or her needs best. Once your child's IEP is developed, a meeting is scheduled once a year to review your child's progress and to make any alterations to reflect his or her changing needs.
If your child is under 3 years of age and has special needs, he or she should be eligible for an early intervention program; this program is available in every state. Each state decides which agency will be the lead agency in the early intervention program. The early intervention services are provided by workers qualified to care for toddlers with disabilities and are usually in the child's home or a place familiar to the child. The services provided are written into an Individualized Family Service Plan (IFSP) that is reviewed at least once every 6 months. The plan will describe services that will be provided to the child, but will also describe services for parents to help them in daily activities with their child and for siblings to help them adjust to having a brother or sister with ASD.
Treatment Options
There is no single best treatment package for all children with ASD. One point that most professionals agree on is that early intervention is important; another is that most individuals with ASD respond well to highly structured, specialized programs.
Before you make decisions on your child's treatment, you will want to gather information about the various options available. Learn as much as you can, look at all the options, and make your decision on your child's treatment based on your child's needs. You may want to visit public schools in your area to see the type of program they offer to special needs children.
Guidelines used by the Autism Society of America include the following questions parents can ask about potential treatments:
- Will the treatment result in harm to my child?
- How will failure of the treatment affect my child and family?
- Has the treatment been validated scientifically?
- Are there assessment procedures specified?
- How will the treatment be integrated into my child's current program? Do not become so infatuated with a given treatment that functional curriculum, vocational life, and social skills are ignored.
The National Institute of Mental Health suggests a list of questions parents can ask when planning for their child:
- How successful has the program been for other children?
- How many children have gone on to placement in a regular school and how have they performed?
- Do staff members have training and experience in working with children and adolescents with autism?
- How are activities planned and organized?
- Are there predictable daily schedules and routines?
- How much individual attention will my child receive?
- How is progress measured? Will my child's behavior be closely observed and recorded?
- Will my child be given tasks and rewards that are personally motivating?
- Is the environment designed to minimize distractions?
- Will the program prepare me to continue the therapy at home?
- What is the cost, time commitment, and location of the program?
Among the many methods available for treatment and education of people with autism, applied behavior analysis (
An effective treatment program will build on the child's interests, offer a predictable schedule, teach tasks as a series of simple steps, actively engage the child's attention in highly structured activities, and provide regular reinforcement of behavior. Parental involvement has emerged as a major factor in treatment success. Parents work with teachers and therapists to identify the behaviors to be changed and the skills to be taught. Recognizing that parents are the child's earliest teachers, more programs are beginning to train parents to continue the therapy at home.
As soon as a child's disability has been identified, instruction should begin. Effective programs will teach early communication and social interaction skills. In children younger than 3 years, appropriate interventions usually take place in the home or a child care center. These interventions target specific deficits in learning, language, imitation, attention, motivation, compliance, and initiative of interaction. Included are behavioral methods, communication, occupational and physical therapy along with social play interventions. Often the day will begin with a physical activity to help develop coordination and body awareness; children string beads, piece puzzles together, paint, and participate in other motor skills activities. At snack time the teacher encourages social interaction and models how to use language to ask for more juice. The children learn by doing. Working with the children are students, behavioral therapists, and parents who have received extensive training. In teaching the children, positive reinforcement is used.22
Children older than 3 years usually have school-based, individualized, special education. The child may be in a segregated class with other autistic children or in an integrated class with children without disabilities for at least part of the day. Different localities may use differing methods but all should provide a structure that will help the children learn social skills and functional communication. In these programs, teachers often involve the parents, giving useful advice in how to help their child use the skills or behaviors learned at school when they are at home.23
In elementary school, the child should receive help in any skill area that is delayed and, at the same time, be encouraged to grow in his or her areas of strength. Ideally, the curriculum should be adapted to the individual child's needs. Many schools today have an inclusion program in which the child is in a regular classroom for most of the day, with special instruction for a part of the day. This instruction should include such skills as learning how to act in social situations and in making friends. Although higher-functioning children may be able to handle academic work, they too need help to organize tasks and avoid distractions.
During middle and high school years, instruction will begin to address such practical matters as work, community living, and recreational activities. This should include work experience, using public transportation, and learning skills that will be important in community living.24
All through your child's school years, you will want to be an active participant in his or her education program. Collaboration between parents and educators is essential in evaluating your child's progress.
The Adolescent Years
Adolescence is a time of stress and confusion; and it is no less so for teenagers with autism. Like all children, they need help in dealing with their budding sexuality. While some behaviors improve during the teenage years, some get worse. Increased autistic or aggressive behavior may be one way some teens express their newfound tension and confusion.
The teenage years are also a time when children become more socially sensitive. At the age that most teenagers are concerned with acne, popularity, grades, and dates, teens with autism may become painfully aware that they are different from their peers. They may notice that they lack friends. And unlike their schoolmates, they aren't dating or planning for a career. For some, the sadness that comes with such realization motivates them to learn new behaviors and acquire better social skills.
Dietary and Other Interventions
In an effort to do everything possible to help their children, many parents continually seek new treatments. Some treatments are developed by reputable therapists or by parents of a child with ASD. Although an unproven treatment may help one child, it may not prove beneficial to another. To be accepted as a proven treatment, the treatment should undergo clinical trials, preferably randomized, double-blind trials, that would allow for a comparison between treatment and no treatment. Following are some of the interventions that have been reported to have been helpful to some children but whose efficacy or safety has not been proven.
Dietary interventions are based on the idea that 1) food allergies cause symptoms of autism, and 2) an insufficiency of a specific vitamin or mineral may cause some autistic symptoms. If parents decide to try for a given period of time a special diet, they should be sure that the child's nutritional status is measured carefully.
A diet that some parents have found was helpful to their autistic child is a gluten-free, casein-free diet. Gluten is a casein-like substance that is found in the seeds of various cereal plants—wheat, oat, rye, and barley. Casein is the principal protein in milk. Since gluten and milk are found in many of the foods we eat, following a gluten-free, casein-free diet is difficult.
A supplement that some parents feel is beneficial for an autistic child is Vitamin B6, taken with magnesium (which makes the vitamin effective). The result of research studies is mixed; some children respond positively, some negatively, some not at all or very little.5
In the search for treatment for autism, there has been discussion in the last few years about the use of secretin, a substance approved by the Food and Drug Administration (FDA) for a single dose normally given to aid in diagnosis of a gastrointestinal problem. Anecdotal reports have shown improvement in autism symptoms, including sleep patterns, eye contact, language skills, and alertness. Several clinical trials conducted in the last few years have found no significant improvements in symptoms between patients who received secretin and those who received a placebo.25
Medications Used in Treatment
Medications are often used to treat behavioral problems, such as aggression, self-injurious behavior, and severe tantrums, that keep the person with ASD from functioning more effectively at home or school. The medications used are those that have been developed to treat similar symptoms in other disorders. Many of these medications are prescribed“off-label” This means they have not been officially approved by the FDA for use in children, but the doctor prescribes the medications if he or she feels they are appropriate for your child. Further research needs to be done to ensure not only the efficacy but the safety of psychotropic agents used in the treatment of children and adolescents.
A child with ASD may not respond in the same way to medications as typically developing children. It is important that parents work with a doctor who has experience with children with autism. A child should be monitored closely while taking a medication. The doctor will prescribe the lowest dose possible to be effective. Ask the doctor about any side effects the medication may have and keep a record of how your child responds to the medication. It will be helpful to read the“patient inser” that comes with your child's medication. Some people keep the patient inserts in a small notebook to be used as a reference. This is most useful when several medications are prescribed.
Anxiety and depression. The selective serotonin reuptake inhibitors (SSRI's) are the medications most often prescribed for symptoms of anxiety, depression, and/or obsessive-compulsive disorder (OCD). Only one of the SSRI's, fluoxetine, (Prozac®) has been approved by the FDA for both OCD and depression in children age 7 and older. Three that have been approved for OCD are fluvoxamine (Luvox®), age 8 and older; sertraline (Zoloft®), age 6 and older; and clomipramine (Anafranil®), age 10 and older.4 Treatment with these medications can be associated with decreased frequency of repetitive, ritualistic behavior and improvements in eye contact and social contacts. The FDA is studying and analyzing data to better understand how to use the SSRI's safely, effectively, and at the lowest dose possible.
Behavioral problems. Antipsychotic medications have been used to treat severe behavioral problems. These medications work by reducing the activity in the brain of the neurotransmitter dopamine. Among the older, typical antipsychotics, such as haloperidol (Haldol®), thioridazine, fluphenazine, and chlorpromazine, haloperidol was found in more than one study to be more effective than a placebo in treating serious behavioral problems.26 However, haloperidol, while helpful for reducing symptoms of aggression, can also have adverse side effects, such as sedation, muscle stiffness, and abnormal movements.
Placebo-controlled studies of the newer“atypica” antipsychotics are being conducted on children with autism. The first such study, conducted by the NIMH-supported Research Units on Pediatric Psychopharmacology (RUPP) Autism Network, was on risperidone (Risperdal®).27 Results of the 8-week study were reported in 2002 and showed that risperidone was effective and well tolerated for the treatment of severe behavioral problems in children with autism. The most common side effects were increased appetite, weight gain and sedation. Further long-term studies are needed to determine any long-term side effects. Other atypical antipsychotics that have been studied recently with encouraging results are olanzapine (Zyprexa®) and ziprasidone (Geodon®). Ziprasidone has not been associated with significant weight gain.
Seizures. Seizures are found in one in four persons with ASD, most often in those who have low IQ or are mute. They are treated with one or more of the anticonvulsants. These include such medications as carbamazepine (Tegretol®), lamotrigine (Lamictal®), topiramate (Topamax®), and valproic acid (Depakote®). The level of the medication in the blood should be monitored carefully and adjusted so that the least amount possible is used to be effective. Although medication usually reduces the number of seizures, it cannot always eliminate them.
Inattention and hyperactivity. Stimulant medications such as methylphenidate (Ritalin®), used safely and effectively in persons with attention deficit hyperactivity disorder, have also been prescribed for children with autism. These medications may decrease impulsivity and hyperactivity in some children, especially those higher functioning children.
Several other medications have been used to treat ASD symptoms; among them are other antidepressants, naltrexone, lithium, and some of the benzodiazepines such as diazepam (Valium®) and lorazepam (Ativan®). The safety and efficacy of these medications in children with autism has not been proven. Since people may respond differently to different medications, your child's unique history and behavior will help your doctor decide which medication might be most beneficial.
Adults with an Autism Spectrum Disorder
Some adults with ASD, especially those with high-functioning autism or with Asperger syndrome, are able to work successfully in mainstream jobs. Nevertheless, communication and social problems often cause difficulties in many areas of life. They will continue to need encouragement and moral support in their struggle for an independent life.
Many others with ASD are capable of employment in sheltered workshops under the supervision of managers trained in working with persons with disabilities. A nurturing environment at home, at school, and later in job training and at work, helps persons with ASD continue to learn and to develop throughout their lives.
The public schools’ responsibility for providing services ends when the person with ASD reaches the age of 22. The family is then faced with the challenge of finding living arrangements and employment to match the particular needs of their adult child, as well as the programs and facilities that can provide support services to achieve these goals. Long before your child finishes school, you will want to search for the best programs and facilities for your young adult. If you know other parents of ASD adults, ask them about the services available in your community. If your community has little to offer, serve as an advocate for your child and work toward the goal of improved employment services. Research the resources listed in the back of this brochure to learn as much as possible about the help your child is eligible to receive as an adult.
Living Arrangements for the Adult with an Autism Spectrum Disorder
Independent living. Some adults with ASD are able to live entirely on their own. Others can live semi-independently in their own home or apartment if they have assistance with solving major problems, such as personal finances or dealing with the government agencies that provide services to persons with disabilities. This assistance can be provided by family, a professional agency, or another type of provider.
Living at home. Government funds are available for families that choose to have their adult child with ASD live at home. These programs include Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid waivers, and others. Information about these programs is available from the Social Security Administration (SSA). An appointment with a local SSA office is a good first step to take in understanding the programs for which the young adult is eligible.
Foster homes and skill-development homes. Some families open their homes to provide long-term care to unrelated adults with disabilities. If the home teaches self-care and housekeeping skills and arranges leisure activities, it is called a“skill-developmen” home.
Supervised group living. Persons with disabilities frequently live in group homes or apartments staffed by professionals who help the individuals with basic needs. These often include meal preparation, housekeeping, and personal care needs. Higher functioning persons may be able to live in a home or apartment where staff only visit a few times a week. These persons generally prepare their own meals, go to work, and conduct other daily activities on their own.
Institutions. Although the trend in recent decades has been to avoid placing persons with disabilities into long-term-care institutions, this alternative is still available for persons with ASD who need intensive, constant supervision. Unlike many of the institutions years ago, today’s facilities view residents as individuals with human needs and offer opportunities for recreation and simple but meaningful work.
No comments:
Post a Comment