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Taking Charge of ADHD
The Complete, Authoritative Guide for Parents
By Russell A. Barkley
The Guilford Press Copyright © 2013 The Guilford Press
All rights reserved.
What Is Attention-Deficit/ Hyperactivity Disorder?
Attention-deficit/hyperactivity disorder, or ADHD, is a developmental disorder of self-control. It consists of obvious problems with attention span, impulse control, and activity level. But, as you will discover here, it is much more. The disorder is also reflected in impairment in will or the capacity to control the child's own behavior relative to the passage of time, that is, to keep future goals and consequences in mind. It is not, as other books will tell you, just a matter of being inattentive and overactive. It is not just a temporary state that will be outgrown in most cases, a trying but normal phase of childhood. It is not caused by parental failure to properly discipline or raise the child, and it is not a sign of some sort of inherent "badness" or moral failing in the child.
ADHD is real: a real disorder, a real problem, and often a real obstacle. It can be heartbreaking and nerve-wracking when not treated properly.
"Why Don't They Do Something about That Kid?"
It's easy to see why many people find it hard to view ADHD as a disability like blindness, deafness, cerebral palsy, or other physical disabilities. Children with ADHD look normal. There is no outward sign that something is physically wrong within their central nervous system or brain. Yet research clearly shows that it is an imperfection in the brain that causes the constant motion, the poor impulse control, the distractibility, and the other behavior that people find so intolerable in a child who has ADHD.
By now you may be familiar with the way others react to ADHD behavior. At first many adults attempt to overlook the child's interruptions, blurted remarks, and violation of rules. With repeated encounters, however, they try to exert more control over the child. When the child fails to respond, the vast majority of adults decide that the child is being willfully and intentionally disruptive. Ultimately most will come to one conclusion, albeit a false one: the child's problems result from how the child is being raised: The child needs more discipline, more structure, more limit setting, and less coddling. The child's parents are considered to be ignorant, careless, permissive, uninvolved, unloving, or, in contemporary parlance, "dysfunctional."
"So, why don't they do something about that kid?"
Of course the parents often are doing something. But when they explain that the child has been diagnosed as having ADHD, judgmental outsiders may react with skepticism. They see the label as simply an excuse by the parents to avoid the responsibility of child rearing and an attempt to make the child yet one more type of helpless victim unaccountable for his actions. This hypocritical response—viewing the child's behavior so negatively, while at the same time labeling the child as "just normal"—leaves outsiders free to continue blaming the parents.
Even the less critical reaction of considering ADHD behavior a stage to be outgrown is not so benign in the long run. Many adults, including some professionals, counsel the parents not to worry. "Just hang in there" or "keep them busy," they advise, "and by adolescence these children will have outgrown it." This is certainly true in some milder forms of ADHD: in perhaps one-sixth to one-third of cases diagnosed in childhood, the behaviors are likely to be within the broadly normal range by adulthood, though still relatively frequent. If your preschool child has more serious problems with ADHD symptoms, however, such advice is small comfort. Being advised to "hang in there" for 7–10 years is hardly consoling. Worse, it is often grossly mistaken or harmful advice. The life of a child whose ADHD is left unrecognized and untreated for years is likely to be filled with failure and underachievement. Up to 30–50% of these children may be retained in a grade in school at least once. As many as 35% fail to complete high school. For half of such children, social relationships are seriously impaired, and for 60% or more of them seriously defiant behavior leads to misunderstanding and resentment by siblings, frequent scolding and punishment, and a greater potential for delinquency and substance abuse later on. Failure by the adults in a child's life to recognize and treat ADHD can leave that child with an unremitting sense of failure in many domains of major life activities.
"Isn't ADHD overdiagnosed? Aren't most children inattentive, active, and impulsive?"
No and yes. ADHD is underdiagnosed in most populations, with 40–60% of such children in any given community in the United States not being diagnosed or treated. But most children do show occasional signs of inattention, overactivity, or impulsiveness. What distinguishes children with ADHD from other children is the far greater frequency and severity with which these behaviors are demonstrated and the far greater impairment children with ADHD are likely to experience in many domains of life.
Imagine the toll on society when, conservatively estimated, 5–8%, or 2.5–4 million school-age children, have ADHD. This means that at least one or even two children with ADHD are in every classroom throughout the United States. It also means that ADHD is one of the most common childhood disorders of which professionals are aware. Finally, it means that all of us know someone with the disorder, whether we can identify it by name or not.
The costs of ADHD to society are staggering, not only in lost productivity and underemployment in adults, but also in reeducation. And what of the costs to society in individuals being undereducated, more accident-prone, and more likely to engage in antisocial behavior, crime, and substance abuse? More than 20% of children with ADHD have set serious fires in their communities, more than 30% have engaged in theft, more than 40% drift into early tobacco and alcohol use, and more than 25% are expelled from high school because of serious misconduct. Recently the effects of ADHD on driving have also been studied. Within their first 5–10 years of independent driving, adolescents and young adults with a diagnosis of ADHD have nearly four to five times as many citations for speeding, two to three times as many auto accidents, have accidents that are two to three times more expensive in damages or likelihood of causing bodily injuries, and have three times as many total traffic citations as young drivers without ADHD. Health economists have also calculated that the cost to society of a teenager's not graduating from high school will be between $370,000 and $450,000 in lost wages, taxes, and other contributions to society as well as in the need for additional social or medical services. Other economists have also shown that raising a child with ADHD results in more than twice the expense in medical bills of families of typical children, and this does not include the extra costs related to actually treating the child's ADHD. It results mostly from the child's greater use of emergency room services and other outpatient medical services. All of this is to say that ADHD is not an economically neutral or benign disorder but a costly one to the family, to the community, and to society more generally.
Recognition of these consequences has spawned a huge effort to understand ADHD. More than 10,000 scientific papers and more than 100 textbooks have been devoted to the subject, with again as many books written for parents and teachers. Countless newspaper stories have addressed ADHD over the course of the 230 years that medical science has recognized the disorder as a serious problem. Many local parents' support associations have sprung up, most notably Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD), which has grown into a national organization of more than 50,000 members. At least five professional organizations include a number of scientific presentations on the subject in their convention programs each year, and one was created in the last decade that is devoted entirely to professionals who specialize in ADHD (American Professional Society for ADHD and Related Disorders). (See "Support Services for Parents" at the back of the book for more information on these resources.) All this is hardly what you would expect if the disorder were not "real," as some critics continue to claim.
Fact versus Fiction
As mentioned in the Introduction, various unsubstantiated claims about the legitimacy of the disorder we call ADHD make the media rounds periodically. Trying to sort through these, in addition to facing the skepticism of friends, family, and teachers, can make it difficult for parents to accept a diagnosis of ADHD and move forward into productive treatment of their child. It may be reassuring to know that more than a decade has passed since a consortium of almost 100 scientists from around the world, many of whom have dedicated a significant portion of their careers to the scientific study of ADHD, signed a consensus statement in January 2002 attesting to the validity of ADHD and its adverse impact on the lives of those diagnosed. The full text can be found on my website (www.russellbarkley.org) or in Clinical Child and Family Psychology Review (vol. 5, no. 2, pages 89–111) for those who are interested. More than 100 European professionals signed this document as well in a version published in Germany a few years later. In addition, here is what we know to date:
Fiction: ADHD is not real, because there is no evidence that it is associated with or is the result of a clear-cut disease or gross brain damage.
Fact: Many legitimate disorders exist without any evident underlying disease or pathology. ADHD is among them.
Disorders for which there is no evidence of brain damage or disease include the vast majority of cases of mental retardation (various brain-scanning methods reveal no obvious disease or damage in children with Down syndrome, for example), childhood autism, reading disabilities, language disorders, bipolar disorders, major depression, and psychosis, as well as medical disorders involving early-stage Alzheimer's disease, the initial onset of multiple sclerosis, and many of the epilepsies. Many disorders arise due to problems in the way the brain has developed or the way it is functioning at the level of nerve cells. Some of these are genetic disorders, in which the condition arises from an error in development rather than from a destructive process or an invading micro-organism. The fact that we do not yet know the precise causes of many of these disorders at the level of the molecules in the brain does not mean they are not legitimate. A disorder, as explained under "What Is ADHD?" later in this chapter, is defined as a "harmful dysfunction," not by the existence of obvious pathological causes.
As for ADHD, the evidence is now unquestionable that we are dealing in most cases with either a delay in or subtle brain injuries sustained during early brain development or abnormal brain functioning that originates in genetics in more than two-thirds of all cases and in pregnancy, birth, or early childhood injuries in the remainder. Chapter 3 explains in more depth what we know about the genetic origins of ADHD. In cases of hereditary origin, many studies using brain-imaging techniques have found the brain to be 3–10% smaller than in other children of the same age, especially in the frontal area, and 2–3 years delayed in maturation. Certain parts of the brain are also found to be less aroused or active or to manifest abnormal forms of activity. Although most cases of ADHD appear to arise from such genetic effects and difficulties with brain development and functioning, ADHD can certainly arise from direct damage to or diseases of the brain as well. A mother's consumption of alcohol or tobacco during pregnancy can increase the risk that her child will develop ADHD 2.5 times over that of the normal population. ADHD is associated not only with fetal alcohol syndrome, but also with repeated infections of the mother during pregnancy that create a higher risk of the disorder in children. Prematurity of birth sufficient to warrant placement in a neonatal intensive care unit can be associated with small brain hemorrhages and thus a higher risk for ADHD in later development. And it is well known that children suffering significant trauma to the frontal part of their brain are likely to develop symptoms of ADHD as a consequence. All of this indicates to scientists that any process that disrupts the normal development or functioning of the frontal part of the brain and its connections to several other brain regions, such as the striatum, anterior cingulate, and cerebellum, is likely to result in ADHD. It just so happens that most cases are not due to such gross damage, but seem to arise from problems in the neural development of these critical brain regions or in their normal functioning. Someday soon we will understand the nature of those problems with greater precision. But for now, the lack of such a precise understanding does not mean that the disorder is not valid or real. If the demonstration of damage or disease were the critical test for diagnosis, then the vast majority of mental disorders, nearly all developmental disabilities, and many medical conditions would have to be considered invalid. Countless people suffering from very real problems would go untreated, and their problems would be unexplored.
Fiction: If ADHD were real, there would be a lab test to detect it.
Fact: There is no medical test for any currently known "real" mental disorder.
Just as we cannot give children with ADHD a test guaranteed to detect it, neither is there a sure-fire lab test for schizophrenia, bipolar disorder, alcoholism, Tourette syndrome, depression, anxiety disorders, or any of the other well-established mental disorders, or for many widespread medical disorders such as arthritis or the early stages of multiple sclerosis or Alzheimer's disease. Yet they are all very real in being harmful dysfunctions.
Fiction: ADHD must be an American fabrication, since it is diagnosed only in the United States.
Fact: Many studies conducted in numerous foreign countries show that all cultures and ethnic groups have children with ADHD. The worldwide prevalence has now been established to be 4.5–5.5% of children and 3.5–4.5% of adults.
For instance, Japan has identified up to 7% of children as having the disorder, China up to 6–8%, France up to 7%, and New Zealand up to 7%, just to name a few of the many countries that have been studied to date. All of this means that ADHD is a universal disorder found in every country studied so far. Other countries may not refer to ADHD by this term, they may not know as much about its causes or treatment, and (depending on the countries' level of development) they may not even recognize it yet as a legitimate disorder. But there is no question that ADHD is a legitimate disorder and is found worldwide.
Fiction: Because the rate of diagnosis of ADHD and the prescription of stimulants to treat it have risen markedly in the last decade or two, ADHD is now widely overdiagnosed.
Fact: As the National Institutes of Health (NIH) Consensus Development Conference on ADHD concluded in late 1998, the surgeon general in a report on children's mental health in the United States in 2002, the Centers for Disease Control and Prevention in the National Health Interview Survey in 2005, and NIMH again in the National Comorbidity Survey Replication in 2005 and 2010, it is underdiagnosis and undertreatment of ADHD (and other disorders) in children that remain the big problems in the United States today.
Several studies indicate that fewer than 60% of all children who have ADHD are diagnosed or treated properly for the disorder and that only half or fewer of these are treated with medication. The greatest problems for our children continue to be that a large percentage of those with legitimate disorders in need of treatment are not being referred, diagnosed, or treated properly and that services across the United States for children with ADHD are inconsistent, erratic, and often well below what is considered the standard of care for the disorder. Thus, proclamations that we are overdiagnosing or overmedicating ADHD or any other child mental disorder in the United States lack credible scientific evidence, as Judith Warner, columnist for the New York Times, showed in her 2011 book We've Got Issues: Children and Parents in the Age of Medication.
Excerpted from Taking Charge of ADHD by Russell A. Barkley. Copyright © 2013 The Guilford Press. Excerpted by permission of The Guilford Press.
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