ADHD: What is the "ADHD experience" like?

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.

WHAT IS ADHD?

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 3.5 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, behavior-changing therapies, and educational options are already available to help people with ADHD focus their attention, build self-esteem, and function in new ways.

In addition, new avenues of research promise to further improve diagnosis and treatment. With so many American children diagnosed as having attention disorder, research on ADHD has become a national priority. With an accelerated program of research beginning in the 1990s--which the President and Congress declared the "Decade of the Brain"--it is possible that scientists will soon pinpoint the biological basis of ADHD and learn how to prevent or treat it even more effectively.

Core Symptoms of ADHD

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.

Hyperactivity. People who are hyperactive always seem to be in motion. They can't sit still. 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 may feel intensely restless. They may be fidgety or, 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, they may blurt out inappropriate comments or 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.

CAUSES OF ADHD

No definitive cause of ADHD has been determined, but the following have been shown to be relevant as overall contributing factors.

Genetics. Studies have shown that children with a parent or sibling (called a first-degree relative) with ADHD are more likely to develop this disorder than children with parents or siblings who do not have ADHD. One study, which has not been duplicated, identified the dopamine transporter gene as a potential genetic abnormality in children with ADHD. However, some researchers believe that there are two types of ADHD, a familial and a nonfamilial type.

Perinatal Complications. There have been some studies which suggest that perinatal complications, such as prolonged or difficult labor, elevated bilirubin levels during the initial days after birth, and so on, occur more frequently in study subjects with ADHD than in those subjects without ADHD.

Neurological Illness. There have been studies conducted which show a possible correlation between the risk of ADHD and early insult to the central nervous system. Studies also show a loss of normal symmetry in parts of the brain (caudate nucleus) and abnormalities in the size or structure of other portions of the brain (cerebellum, corpus callosum) in subjects with ADHD.

DIAGNOSIS OF ADHD

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 careless 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 be persistent for at least 6 months before the diagnosis should be made. 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 Can Look Like ADHD?

• Underachievement at school due to a learning disability
• Attention lapses caused by petit mal seizures
• A middle ear infection that causes an intermittent hearing problem
• Disruptive or unresponsive behavior due to anxiety or depression

Books for Further Reading:

For Children and Teens

• Gordon, M. Jumpin' Johnny, Get Back to Work! A Child's Guide to ADHD/Hyperactivity. DeWitt, New York: GSI Publications, 1991. (for ages 7-12)
• Nadeau, K., and Dixon, E. Learning to Slow Down and Pay Attention. Annandale, VA: Chesapeake Psychological Publications, 1993.
• Ingersoll, B. Distant Drums, Different Drummers: A Guide for Young People with ADHD. Cape Publ., 1995.

For Parents:

• Anderson, W., Chitwood, S., & Hayden, D. (1990). Negotiating the Special Education Maze: A Guide for Parents and Teachers. 2d ed. Rockville, MD: Woodbine House, 1990.
• Ingersoll, B., and Goldstein, S. Attention Deficit Disorder and Learning Disabilities: Realities, Myths, and Controversial Treatments. New York: Doubleday, 1993.
• Kennedy, P.; Terdal, L.; Fusetti, L. The Hyperactive Child Book : Treating, Educating, and Living With an Adhd Child - Strategies That Really Work, from an Award-Winning Team of Experts. St. Martin's Press, 1994.
• Reimers, C and Brunger, B. ADHD in the Young Child: Driven to Re-Direction: A Book for Parents and Teachers. Specialty Pr. Inc., 1999.

For Teachers and Specialists:

• Barkley, R and Murphy, K. Attention Deficit Hyperactivity Disorder: A Clinical Workbook. New York: Guilford Publications, 1998.
• Copeland, E., and Love, V. Attention Without Tension: A Teacher's Handbook on Attention Disorders. Atlanta, GA: 3 C's of Childhood, 1992.
• Harris, K., and Graham, S. Helping Young Writers Master the Craft. Cambridge, MA: Brookline Books, 1992.
• Johnson, D . I Can't Sit Still-Educating and Affirming Inattentive and Hyperactive Children: Suggestions for Parents, Teachers, and Other Care Providers of Children to Age 10. Santa Cruz, CA: ETR Associates, 1992.
• Parker, H. The ADD Hyperactivity Handbook for Schools. Plantation, FL: Impact Publications, 1992.

Scientific Publications

• Adesman, A. R., et al. (1999). Management of stimulant medications in children with attention-deficit/hyperactivity disorder. Pediatric Clinics of North America, 46 (5), 945-963..
• Bauermeister, J. J., Canino, G., Bravo, M., Ramirez, R., Jensen, P. S., Chavez, L., et al. (2003). Stimulant and psychosocial treatment of ADHD in Latino/Hispanic children. Journal of the American Academy of Child and Adolescent Psychiatry, 42, 851-855.
• Galanter, C. A., Carlson, G. A., Jensen, P.S., Greenhill, L. L., Davies, M., Li, W., et al. (2003). Response to methylphenidate in children with attention deficit hyperactivity disorder and manic symptoms in the Multimodal Treatment Study of Children with Attention Deficit Hyperactivity Disorder titration trial. Journal of Child and Adolescent Psychopharmacology, 13, 123-136.
• Jensen, P. S., et al. (1999). Are stimulants overprescribed? Treatment of ADHD in four U.S. communities. Journal of the American Academy of Child and Adolescent Psychiatry, 38 (7), 797-804.
• Jensen, P. S., Garcia, J. A., Glied, S., Crowe, M., Foster, M., Schlander, M., et al. (2005). Cost-effectiveness of ADHD treatments: Findings from the MTA study. American Journal of Psychiatry, 162, 1628-1636.
• MTA Cooperative Group. (1999). A 14-month randomized clinical trial of treatment strategies for attention-deficit/hyperactivity disorder. Archive of General Psychiatry, 56, 1073-1086.
• MTA Cooperative Group. (1999). Moderators and mediators of treatment response for children with attention-deficit/hyperactivity disorder. Archives of General Psychiatry, 56, 1088-1099.
• MTA Cooperative Group (2004). 24-month outcomes of treatment strategies for attention-deficit/hyperactivity disorder (ADHD): The NIMH MTA follow-up. Pediatrics, 113, 754-761.
• MTA Cooperative Group (2004). Changes in effectiveness and growth during the follow-up phase of the NIMH-MTA study. Pediatrics, 113, 761-769.
• Owens, E. B., Hinshaw, S. P., Kraemer, H. C., Arnold, L. E., Abikoff, H. B., Cantwell, D. P., et al. (2003). Which treatment for whom for ADHD? Moderators of treatment response in the MTA. Journal of Abnormal Child Psychology, 71 (3), 540-552.
• Olfson, M., Gameroff, M., Marcus, S., & Jensen, P. (2003). National trends in the treatment of ADHD.  American Journal of Psychiatry, 160, 1071-1077.
• Silver, L. B. (1999). Alternative (nonstimulant) medications in the treatment of attention-deficit/hyperactivity disorder in children. Pediatric Clinics of North America, 46 (5), 965-975.
• Swanson J, et al. (1999). Assessment and intervention for attention-deficit/hyperactivity disorder in the schools: Lessons from the MTA study. Pediatric Clinics of North America, 46 (5), 993-1009.

For further research: http://www.ncbi.nlm.nih.gov/PubMed/

On the Web

http://www.nimh.nih.gov/publicat/adhd.cfm#adhd8

http://www.nlm.nih.gov/medlineplus/attentiondeficitdisorderwithhyperactivity.html

http://www.nimh.nih.gov/publicat/consensus.cfm

http://www.nami.org/helpline/adhd.htm

www.chadd.org

Support Groups and Organizations

Association for Advancement of Behavior Therapy
305 Seventh Avenue
New York, NY 10001
(212) 647-1890

Maintains a membership listing of mental health professionals focusing on behavior therapy.

Attention Deficit Information Network (Ad-IN)
475 Hillside Avenue
Needham, MA 02194
(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
www.mentalhealth.org/cmhs/index.htm

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 and Adults with Attention Deficit Disorders (CH.A.D.D.)
8181 Professional Place, Suite 201
Landover, MD 20785
(800) 233-4050
www.chadd.org

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
11920 Association Drive
Reston, VA 22091
(703) 620-3660

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
1021 Prince Street
Alexandria, VA 22314
(703) 684-7710

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
American Council on Education
1 Dupont Circle, Suite 800
Washington, DC 20036
(800) 544-3284

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

Learning Disabilities Association of America

4156 Library Road
Pittsburgh, PA 15234
(412) 341-8077

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

NAMI The Nation's Voice on Mental Illness
Address: Colonial Place Three
2107 Wilson Blvd., Suite 300
Arlington, VA 22201-3042
Helpline: (800) 950-NAMI (6264)
Tel: 703-524-7600
Fax: 703-524-9094
www.nami.org

The grass roots family movement which provides information and helpful referral on all aspects of mental illness, as well as a voice in government.

National Association of Private Schools
for Exceptional Children
1522 K Street, NW, Suite 1032
Washington, DC 20005
(202) 408-3338

Provides referrals to private special education programs.

National Center for Learning Disabilities
99 Park Avenue, 6th Floor
New York, NY 10016
(212) 687-7211

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

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

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

National Institute of Mental Health
NIMH Public Inquiries
6001 Executive Boulevard, Rm. 8184, MSC 9663
Bethesda, MD 20892-9663 U.S.A.
Voice (301) 443-4513
Fax (301) 443-4279

www.nimh.nih.gov

Provides information on research of mental disorders and offers statements developed during NIH Consensus Development Conferences of relevance to the mental health field. These conferences convened panels of experts to evaluate available scientific information about several mental disorders.

Sibling Information Network
A.J. Pappanikou Center
1776 Ellington Road
South Windsor, CT 06074
(203) 648-1205

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

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