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APPENDICES from There's Always Help; There's Always Hope

PRINT PAGE Topic IX
ATTENTION DEFICIT HYPERACTIVITY DISORDER
Reprinted from NIH Publication No. 96-3572
Printed 1994, Reprinted 1996.

Imagine living in a fast-moving kaleidoscope, where sounds, images, and thoughts are constantly shifting. Feeling easily bored, yet helpless to keep your mind on tasks you need to complete. Distracted by unimportant sights and sounds, your mind drives you from one thought or activity to the next. Perhaps you are so wrapped up in a collage of thoughts and images that you don’t notice when someone speaks to you.

For many people, this is what it’s like to have Attention Deficit Hyperactivity Disorder, or ADHD. They may be unable to sit still, plan ahead, finish tasks, or be fully aware of what’s going on around them. To their family, classmates or coworkers, they seem to exist in a whirlwind of disorganized or frenzied activity. Unexpectedly—on some days and in some situations—they seem fine, often leading others to think the person with ADHD can actually control these behaviors. As a result, the disorder can mar the person’s relationships with others in addition to disrupting their daily life, consuming energy, and diminishing self-esteem.

ADHD, once called hyperkinesis or minimal brain dysfunction, is one of the most common mental disorders among children. It affects 3 to 5 percent of all children, perhaps as many as 2 million American children. Two to three times more boys than girls are affected. On the average, at least one child in every classroom in the United States needs help for the disorder. ADHD often continues into adolescence and adulthood, and can cause a lifetime of frustrated dreams and emotional pain.

But there is help...and hope. In the last decade, scientists have learned much about the course of the disorder and are now able to identify and treat children, adolescents, and adults who have it. A variety of medications, behaviorchanging therapies, and educational options are already available to help people with ADHD focus their attention, build self-esteem, and function in new ways.

Understand the Problem

Mark

Mark, age 14, has more energy than most boys his age. But then, he’s always been overly active. Starting at age 3, he was a human tornado, dashing around and disrupting everything in his path. At home, he darted from one activity to the next, leaving a trail of toys behind him. At meals, he upset dishes and chattered nonstop. He was reckless and impulsive, running into the street with oncoming cars, no matter how many times his mother explained the danger or scolded him. On the playground, he seemed no wilder than the other kids. But his tendency to overreact—like socking playmates simply for bumping into him—had already gotten him into trouble several times. His parents didn’t know what to do. Mark’s doting grandparents reassured them, “Boys will be boys. Don’t worry, he’ll grow out of it.” But he didn’t.

Lisa

At age 17, Lisa still struggles to pay attention and act appropriately. But this has always been hard for her. She still gets embarrassed thinking about that night her parents took her to a restaurant to celebrate her 10th birthday. She had gotten so distracted by the waitress’ bright red hair that her father called her name three times before she remembered to order. Then before she could stop herself, she blurted, “Your hair dye looks awful!”

In elementary and junior high school, Lisa was quiet and cooperative but often seemed to be daydreaming. She was smart, yet couldn’t improve her grades no matter how hard she tried. Several times, she failed exams. Even though she knew most of the answers, she couldn’t keep her mind on the test. Her parents responded to her low grades by taking away privileges and scolding, “You’re just lazy. You could get better grades if you only tried.” One day, after Lisa had failed yet another exam, the teacher found her sobbing, “What’s wrong with me?”

Henry

Although he loves puttering around in his shop, for years Henry has had dozens of unfinished carpentry projects and ideas for new ones he knew he would never complete. His garage was piled so high with wood, he and his wife joked about holding a fire sale.

Every day Henry faced the real frustration of not being able to concentrate long enough to complete a task. He was fired from his job as stock clerk because he lost inventory and carelessly filled out forms. Over the years, afraid that he might be losing his mind, he had seen psychotherapists and tried several medications, but none ever helped him concentrate. He saw the same lack of focus in his young son and worried.

What Are the Symptoms of ADHD?
The three people you’ve just met, Mark, Lisa, and Henry, all have a form of ADHD—Attention Deficit Hyperactivity Disorder. ADHD is not like a broken arm, or strep throat. Unlike these two disorders, ADHD does not have clear physical signs that can be seen in an x-ray or a lab test. ADHD can only be identified by looking for certain characteristic behaviors, and as with Mark, Lisa, and Henry, these behaviors vary from person to person. Scientists have not yet identified a single cause behind all the different patterns of behavior—and they may never find just one. Rather, someday scientists may find that ADHD is actually an umbrella term for several slightly different disorders.

At present, ADHD is a diagnosis applied to children and adults who consistently display certain characteristic behaviors over a period of time. The most common behaviors fall into three categories: inattention, hyperactivity, and impulsivity.

Inattention. People who are inattentive have a hard time keeping their mind on any one thing and may get bored with a task after only a few minutes. They may give effortless, automatic attention to activities and things they enjoy. But focusing deliberate, conscious attention to organizing and completing a task or learning something new is difficult.

For example, Lisa found it agonizing to do homework. Often, she forgot to plan ahead by writing down the assignment or bringing home the right books. And when trying to work, every few minutes she found her mind drifting to something else. As a result, she rarely finished and her work was full of errors.

Hyperactivity. People who are hyperactive always seem to be in motion. They can’t sit still. Like Mark, they may dash around or talk incessantly. Sitting still through a lesson can be an impossible task. Hyperactive children squirm in their seat or roam around the room. Or they might wiggle their feet, touch everything, or noisily tap their pencil. Hyperactive teens and adults may feel intensely restless. They may be fidgety or, like Henry, they may try to do several things at once, bouncing around from one activity to the next.

Impulsivity. People who are overly impulsive seem unable to curb their immediate reactions or think before they act. As a result, like Lisa, they may blurt out inappropriate comments. Or like Mark, they may run into the street without looking. 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.

Not everyone who is overly hyperactive, inattentive, or impulsive has an attention disorder. Since most people sometimes blurt out things they didn’t mean to say, bounce from one task to another, or become disorganized and forgetful, how can specialists tell if the problem is ADHD?

To assess whether a person 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 people 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 the office? The person’s pattern of behavior is compared against a set of criteria and characteristics of the disorder. These criteria appear in a diagnostic reference book called the DSM (short for the Diagnostic and Statistical Manual of Mental Disorders).

According to the diagnostic manual, 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. Or they may show all three types of behavior.

    According to the DSM, signs of inattention include:
  • Becoming easily distracted by irrelevant sights and sounds
  • Failing to pay attention to details and making care-less mistakes
  • Rarely following instructions carefully and completely
  • Losing or forgetting things like toys, or pencils, books, and tools needed for a task

    Some signs of hyperactivity and impulsivity are:
  • Feeling restless, often fidgeting with hands or feet, or squirming
  • 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 for a turn.

Because everyone shows some of these behaviors at times, the DSM contains very specific guidelines for determining when they indicate ADHD. The behaviors must appear early in life, before age 7, and continue for at least 6 months. In children, they must be more frequent or severe than in others the same age. Above all, the behaviors must create a real handicap in at least two areas of a person’s life, such as school, home, work, or social settings. So, someone whose work or friendships are not impaired by these behaviors would not be diagnosed with ADHD. Nor would a child who seems overly active at school but functions well elsewhere.

What Causes ADHD?
Understandably, one of the first questions parents ask when they learn their child has an attention disorder is “Why? What went wrong?

Health professionals stress that since no one knows what causes ADHD, it doesn’t help parents to look backward to search for possible reasons. There are too many possibilities to pin down the cause with certainty. It is far more important for the family to move forward in finding ways to get the right help.

Scientists, however, do need to study causes in an effort to identify better ways to treat, and perhaps some day, prevent ADHD. They are finding more and more evidence that ADHD does not stem from home environment, but from biological causes. When you think about it, there is no clear relationship between home life and ADHD. Not all children from unstable or dysfunctional homes have ADHD. And not all children with ADHD come from dysfunctional families. Knowing this can remove a huge burden of guilt from parents who might blame themselves for their child’s behavior.

Over the last 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.

One disappointing theory was that all attention disorders and learning disabilities were caused by minor head injuries or undetectable damage to the brain, perhaps from early infection or complications at birth. Based on this theory, for many years both disorders were called “minimal brain damage” or “minimal brain dysfunction.” Although certain types of head injury can explain some cases of attention disorder, the theory was rejected because it could explain only a very small number of cases. Not everyone with ADHD or LD has a history of head trauma or birth complications.

Another theory was that refined sugar and food additives make children hyperactive and inattentive. As a result, parents were encouraged to stop serving children foods containing artificial flavorings, preservatives, and sugars. However, this theory, too, came under question. In 1982, the National Institutes of Health (NIH), the Federal agency responsible for biomedical research, held a major scientific conference to discuss the issue. After studying the data, the scientists concluded that the restricted diet only seemed to help about 5 percent of children with ADHD, mostly either young children or children with food allergies.

    ADHD is not usually caused by:
  • Too much TV
  • Food allergies
  • Excess sugar
  • Poor home life
  • Poor schools

In recent years, as new tools and techniques for studying the brain have been developed, scientists have been able to test more theories about what causes ADHD.

Using one such technique, NIMH scientists demonstrated a link between a person’s ability to pay continued attention and the level of activity in the brain. Adult subjects were asked to learn a list of words. As they did, scientists used a PET (positron emission tomography) scanner to observe the brain at work. The researchers measured the level of glucose used by the areas of the brain that inhibit impulses and control attention. Glucose is the brain’s main source of energy, so measuring how much is used is a good indicator of the brain’s activity level. The investigators found important differences between people who have ADHD and those who don’t. In people with ADHD, the brain areas that control attention used less glucose, indicating that they were less active. It appears from this research that a lower level of activity in some parts of the brain may cause inattention.

The next step will be to research why there is less activity in these areas of the brain. Scientists at NIMH hope to compare the use of glucose and the activity level in mild and severe cases of ADHD. They will also try to discover why some medications used to treat ADHD work better than others, and if the more effective medications increase activity in certain parts of the brain.

Researchers are also searching for other differences between those who have and do not have ADHD. Research on how the brain normally develops in the fetus offers some clues about what may disrupt the process. Throughout pregnancy and continuing into the first year of life, the brain is constantly developing. It begins its growth from a few all-purpose cells and evolves into a complex organ made of billions of specialized, interconnected nerve cells. By studying brain development in animals and humans, scientists are gaining a better understanding of how the brain works when the nerve cells are connected correctly and incorrectly. Scientists at NIMH and other research institutions are tracking clues to determine what might prevent nerve cells from forming the proper connections. Some of the factors they are studying include drug use during pregnancy, toxins, and genetics.

Research shows that a mother’s use of cigarettes, alcohol, or other drugs during pregnancy may have damaging effects on the unborn child. These substances may be dangerous to the fetus’s developing brain. It appears that alcohol and the nicotine in cigarettes may distort developing nerve cells. For example, heavy alcohol use during pregnancy has been linked to fetal alcohol syndrome (FAS), a condition that can lead to low birth weight, intellectual impairment, and certain physical defects. Many children born with FAS show much the same hyperactivity, inattention, and impulsivity as children with ADHD.

Drugs such as cocaine—including the smokable form known as crack—seem to affect the normal development of brain receptors. These brain cell parts help to transmit incoming signals from our skin, eyes, and ears, and help control our responses to the environment. Current research suggests that drug abuse may harm these receptors. Some scientists believe that such damage may lead to ADHD. Toxins in the environment may also disrupt brain development or brain processes, which may lead to ADHD.

Lead is one such possible toxin. It is found in dust, soil, and flaking paint in areas where leaded gasoline and paint were once used. It is also present in some water pipes. Some animal studies suggest that children exposed to lead may develop symptoms associated with ADHD, but only a few cases have actually been found.

Other research shows that attention disorders tend to run in families, so there are likely to be genetic influences. Children who have ADHD usually have at least one close relative who also has ADHD. And at least one-third of all fathers who had ADHD in their youth bear children who have ADHD. Even more convincing: the majority of identical twins share the trait. At the National Institutes of Health, researchers are also on the trail of a gene that may be involved in transmitting ADHD in a small number of families with a genetic thyroid disorder.

How Is ADHD Identified and Diagnosed?
(Only the paragraphs pertaining to adults are provided here.)
Adults are diagnosed for ADHD based on their performance at home and at work. When possible, their parents are asked to rate the person’s behavior as a child. A spouse or roommate can help rate and evaluate current behaviors. But for the most part, adults are asked to describe their own experiences. One symptom is a sense of frustration. Since people with ADHD are often bright and creative, they often report feeling frustrated that they’re not living up to their potential. Many also feel restless and are easily bored. Some say they need to seek novelty and excitement to help channel the whirlwind in their minds. Although it may be impossible to document when these behaviors first started, most adults with ADHD can give examples of being inattentive, impulsive, overly active, impatient, and disorganized most of their lives.

Until recent years, adults were not thought to have ADHD, so many adults with ongoing symptoms have never been diagnosed. People like Henry go for decades knowing that something is wrong, but not knowing what it is. Psychotherapy and medication for anxiety, depression, or manic-depression fail to help much, simply because the ADHD itself is not being addressed. Yet half the children with ADHD continue to have symptoms through adulthood. The recent awareness of adult ADHD means that many people can finally be correctly diagnosed and treated.

A correct diagnosis lets people move forward in their lives. Once the disorder is known, they can begin to receive whatever combination of educational, medical, and emotional help they need.

An effective treatment plan helps people with ADHD and their families at many levels. For adults with ADHD, the treatment plan may include medication, along with practical and emotional support. For children and adolescents, it may include providing an appropriate classroom setting, the right medication, and helping parents to manage their child’s behavior.

What Treatments Are Available?
For decades, medications have been used to treat the symptoms of ADHD. Three medications in the class of drugs known as stimulants seem to be the most effective in both children and adults. These are methylphenidate (Ritalin), dextroamphetamine (Dexedrine or Dextrostat), and pemoline (Cylert). For many people, these medicines dramatically reduce their hyperactivity and improve their ability to focus, work, and learn. The medications may also improve physical coordination, such as handwriting and ability in sports. Recent research by NIMH suggests that these medicines may also help children with an accompanying conduct disorder to control their impulsive, destructive behaviors.

Ritalin helped Henry focus on and complete tasks for the first time. Dexedrine helped Mark to sit quietly, focus his attention, and participate in class so he could learn. He also became less impulsive and aggressive. Along with these changes in his behavior, Mark began to make and keep friends.

Unfortunately, when people see such immediate improvement, they often think medication is all that’s needed. But these medicines don’t cure the disorder, they only temporarily control the symptoms. Although the drugs help people pay better attention and complete their work, they can’t increase knowledge or improve academic skills. The drugs alone can’t help people feel better about themselves or cope with problems. These require other kinds of treatment and support.

For lasting improvement, numerous clinicians recommend that medications should be used along with treatments that aid in these other areas. There are no quick cures. Many experts believe that the most significant, longlasting gains appear when medication is combined with behavioral therapy, emotional counseling, and practical support. Some studies suggest that the combination of medicine and therapy may be more effective than drugs alone. NIMH is conducting a large study to check this.

Can ADHD Be Outgrown or Cured?
Even though most people don’t outgrow ADHD, people do learn to adapt and live fulfilling lives. Mark, Lisa, and Henry are making good lives for themselves—not by being cured, but by developing their personal strengths. With effective combinations of medicine, new skills, and emotional support, people with ADHD can develop ways to control their attention and minimize their disruptive behaviors. Like Henry, they may find that by structuring tasks and controlling their environment, they can achieve personal goals. Like Mark, they may learn to channel their excess energy into sports and other high energy activities. And like Lisa, they can identify career options that build on their strengths and abilities.

As they grow up, with appropriate help from parents and clinicians, children with ADHD become better able to suppress their hyperactivity and to channel it into more socially acceptable behaviors, like physical exercise or fidgeting. And although we know that half of all children with ADHD will still show signs of the problem into adulthood, we also know that the medications and therapy that help children also work for adults.

All people with ADHD have natural talents and abilities that they can draw on to create fine lives and careers for themselves. In fact, many people with ADHD even feel that their patterns of behavior give them unique, often unrecognized, advantages. People with ADHD tend to be outgoing and ready for action. Because of their drive for excitement and stimulation, many become successful in business, sports, construction, and public speaking. Because of their ability to think about many things at once, many have won acclaim as artists and inventors. Many choose work that gives them freedom to move around and release excess energy. But some find ways to be effective in quieter, more sedentary careers. Sally, a computer programmer, found that she thinks best when she wears headphones to reduce distracting noises. Like Henry, some people strive to increase their organizational skills. Others who own their own business find it useful to hire support staff to provide day-to-day management.

Support Groups and Organizations

Attention Deficit Information Network (Ad-IN)
58 Prince Street Needhan, MA
02492 (781) 455-9895

Provides up-to-date information on current research, regional meetings. Offers aid in finding solutions to practical problems faced by adults and children with an attention disorder.

ADD Warehouse 300 NW 70th Avenue, Suite 102
Plantation, FL 33317
(800) 233-9273
www.addwarehouse.com

Distributes books, tapes, videos, assessment on attention deficit hyperactivity disorders. A central location for ordering many of the books listed above. Call for catalog.

Center for Mental Health Services Office of Consumer, Family, and Public Information
5600 Fishers Lane, Room 15-105
Rockville, MD 20857
(301) 443-2792

This national center, a component of the U.S. Public Health Service, provides a range of information on mental health, treatment, and support services.

Children andAdults with Attention-Deficit Hyperactivity Disorder (CHADD)
8181 Professional Place, Suite 201
Landover, MD 20785
Toll free: (800) 233-4050
Phone: (301) 306-7070
Fax: (301) 306-7090
Internet: http://www.chadd.org/index.cfm

A major advocate and key information source for people dealing with attention disorders. Sponsors support groups; and publishes two newsletters concerning attention disorders for parents and professionals.

Council for Exceptional Children
1110 N. Glebe Road, Suite 300
Arlington, VA 22201-5704
(703) 620-3660
(888) CEC-SPED
www.cec.sped.org

Provides publications for educators. Can also provide referral to ERIC (Educational Resource Information Center) Clearinghouse for Handicapped and Gifted Children.

Federation of Families for Children’s Mental Health
1101 King St., Suite 420 Alexandria, VA 22314
Phone: (703) 684-7710
Fax: (703) 836-1040
Email: ffcmh@ffcmh.org
Internet: www.ffcmh.org

Provides information, support, and referrals through federation chapters throughout the country. This national parent-run organization focuses on the needs of children with broad mental health problems.

HEATH Resource Center George Washington University Heath Resource Center
2121 K Street N.W., Suite 220
Washington, DC 20037
(800) 544-3284
www.heath.gwu.edu

A national clearinghouse on post-high school education for people with disabilities.

Learning Disabilities Association of America
4156 Library Road Pittsburgh, PA 15234
(412) 341-1515
www.ida.natl.org

Provides information and referral to state chapters, parent resources, and local support groups. Publishes news briefs and a professional journal.

National Association of Private Special Education Centers
1522 K Street, NW, Suite 1032
Washington, DC 20005
(202) 408-3338

Provides referrals to private special education programs.

National Center for Learning Disabilities
381 Park Avenue South, Suite 1401
New York, NY 10016
(212) 545-7510
www.ncld.org

Provides referrals and resources. Publishes Their World magazine describing true stories on ways children and adults cope with LD.

National Clearinghouse for Alcohol and Drug Information
P.O. Box 2345 Rockville, MD 20847
(800) 729-6686
www.health.org

Provides information on the risks of alcohol during pregnancy, and fetal alcohol syndrome.

National Information Center for Children and Youth with Disabilities (NICHCY)
P.O. Box 1492 Washington, DC 20013
(800) 695-0285
www.kidsource.com/NICHCY

Publishes free, fact-filled newsletters. Arranges workshops. Advises parents on the laws entitling children with disabilities to special education and other services.

Sibling Information Network
249 Glenbrook Road P.O. Box U64
Storrs, CT 06269
(860)486-4985

Publishes a newsletter for and about siblings of children with special needs.

Tourette Syndrome Association
42-40 Bell Boulevard Bayside, NY 11361
(718) 224-2999
www.tsa-usa.org

State and local chapters provide national information, advocacy, research, and support.

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