ATTENTION DEFICIT DISORDER (ADD) FREQUENTLY ASKED QUESTIONS Index: |1) What is an Attention Deficit Disorder? 2) What are some common symptoms of ADD? 3) How is ADHD diagnosed? 4) Is this a new disease? 5) What other names has this disease been known by? 6) What causes ADHD (Etiology)? 7) What is the long term prognosis? 8) Are there other complications of this disease? 9) What treatment is there for ADHD? 10) Controversial treatments for ADHD 11) What medications can be used in treatment? 12) Monitoring tools/scales 13) Myth-conceptions 14) Are there any support groups? 15) Is there a good commercial source for information? 16) Are there any internet resources? 17) Books on ADD 18) ADD in Adults? 1) What is an Attention Deficit Disorder? Attention Deficit Disorder (ADD) is a syndrome which is usually characterized by serious and persistent difficulties resulting in: a) poor attention span b) weak impulse control c) hyperactivity ADD also has a subtype which includes hyperactivity (ADHD). It is a treatable (note not cureable) complex disorder which affects approximately 3 to 6 percent of the population (70% in relatives of ADD children). Inattentiveness, impulsivity, and oftentimes, hyperactivity, are common characteristics of the disorder. Boys with ADD tend to outnumber girls by 3 to 1, although ADD in girls is underidentified. The term ADD is usually referring to ADHD. ADD without hyperactivity is also known as ADD/WO (With Out) or Undifferentiated ADD. 2) What are some common symptoms of ADD? 1. Excessively fidgets or squirms 2. Difficulty remaining seated 3. Easily distracted 4. Difficulty awaiting turn in games 5. Blurts out answers to questions 6. Difficulty following instructions 7. Difficulty sustaining attention 8. Shifts from one activity to another 9. Difficulty playing quietly 10. Often talks excessively 11. Often interrupts 12. Often doesn't listen to what is said 13. Often loses things 14. Often engages in dangerous activities Recent literature proposes 2 subtypes of ADHD Behavioral and Cognitive (being split 80/20). 3) How is ADHD diagnosed? The list above is taken directly from the American Psychiatric Association's (APA) latest "Diagnostics and Statistical Manual of Mental Disorders (DSM-III-R). To qualify for a diagnosis of ADHD a child must exhibit 8 of these for a period longer than 6 months and have appeared before the age of 7 years. EEG abnormalities can appear in up to 50% of ADD children (not used in diagnoses). However, you don`t have to be hyperactive to have an attention deficit disorder. In fact, up to 30% of children with ADD are not hyperactive at all, but still have a lot of trouble focusing. 4) Is this a new disease? No. It has been identified in medical literature more than 100 years ago. A popular German tale (Hoffmann's "Struwel Peter") written in rhyme for children portrays a child with ADHD. 5) What other names has this disease been known by: Minimal brain dysfunction (MBD) and hyperactivity (hyper-kinetic) or (in Britain) conduct disorder (not the same implications as the North American reference in the DSM-III-R). 6) What causes ADHD (Etiology)? A single cause has not been conclusively proven. Some possibilities are: 1. Genetic/ Hereditary 2. Brain damage (head trauma) before, after and during birth (twice as likely to have had labour> 13hrs) 3. Brain damage by toxins (internal bacterial and viral, external fetal alcohol syndrome, metal intoxication eg lead) 4. Strongly held belief by some people (including at least one book Feingold's "Cookbook for Hyperactive children") that food allergies cause ADD. This has *not* been proven scientifically. 7) What is the long term prognosis? One book states 20% outgrow it by puberty but other problems can interfere.. ADD that lasts into Adulthood is referred to as ADD-RT (Residual Type). 8) Are there other complications of this disease? Yes. Not really complications in the classical sense but rather clusters of other problems of the Central Nervous System (CNS) such as: - Learning Disabilities (LDs) - TIC disorders (such as Tourette`s) 20 % of ADD children whereas 40 to 60% of TIC children have ADD - Gross and Fine Motor control delays (coordination) 50% of ADD children - developmental delays (such as speech) - Obsessive-compulsive disorders (OCD) 9) What treatment is there for ADHD? No simple treatment. Must be a multi-modal approach including (but not limited to): a. Medication b. Training of parents c. Counselling/training of child: such as modeling, self-verbalization and self-reinforcement. d. Special education environment 10) Controversial ADD Treatments This section was condensed from an article "Controversial Treatments for Children with ADHD" By S. Goldstein Ph.D. & B. Ingersoll Ph.D. a) Dietary Intervention. The changing of a child's diet to prevent ADHD. Conclusion: No scientific evidence of effectiveness. b) Megavitamin and Mineral Supplements. The use of very high does of vitamins and/or minerals to treat ADHD. Conclusion: No scientific evidence of effectiveness. c) Anti-Motion Sickness Medication. The advocates of this believe that a relationship exists between ADHD and the inner-ear. Conclusion: No scientific evidence of effectiveness. d) Candida Yeast. Those who support this model believe that toxins created by the yeast overgrow and weaken the immune system making the individual susceptible to many illnesses including ADHD. Conclusion: No scientific evidence of effectiveness. e) EEG Biofeedback. Proponents of this approach believe that ADHD children can be trained to increase the type of brain-wave activity associated with sustained attention. Conclusion: No scientific evidence of effectiveness. f) Applied Kinesiology (Chiropratic approach). This theory believes that Learning Disabilities are caused by 2 specific bones in the skull. Conclusion: No scientific evidence of effectiveness. g) Optometric Vision Training. This proposes that reading related Learning Disabilities are caused by visual problems. Conclusion: No scientific evidence of effectiveness. 11) What medications can be used in treatment? This is a constantly evolving area. At the time of the writing (Jan 93) of this FAQ and known to this author are: Phychostimulants (Trade name and chemical name): 1. Ritalin (methylphenidate) also SR Ritalin (Slow Release) 2. Dexedrine (dextroamphetamine) 3. Cylert (pemoline) Antidepressants (Tricyclic or TCAs) used to treat bed wetting and depression: 1. Tofranil or Janimine (impramine) 2. Norpramin or Pertofane (desipramine) 3. Pamelor (nortriptyline) principle metabolite of ELavil (amitripyline) Neuroleptics (usually used with stimulant): 1. thioridazine 2. Propericiazine 3. chlorpromazine (unsure of category) Tranquilizers: 1. Mellaril 2. Atarax Antihypertensive: 1. Catapres (clonidine) Others: 1. antidepressants ( called monoamin oxidase inhibitors MAO) fluoxetine or burproprion 2. lithium 3. Tegretol (anticonvulsant caramazepine) mood stabilizer Note none of these (listed in other) have been extensively studied for use with children. 12) Monitoring tools/scales: 1. Conners Teacher/Parents Rating scales (CTRS,CPRS) * 2. ADD-H Comprehensive teacher rating scale (ACTeRS) * 3. Child Attention Problems (CAP) Rating scale 4. Yale Children's Inventory (YCI) 5. Attention Battery (includes Continuous Performance Task, Progressive Maze Test and Sequential Organization Test (SOT). 6. DSM-III-R 7. Wechsler Intelligence Scales for Children (WISC-R) 8. Child Behavior Checklist (CBCL) 9. T.O.V.A - Test of Variables of Attention* 10. Learning Efficiency Test II (LETT-II)* 11. DEVELOPMENTAL TEST OF VISUAL MOTOR INTEGRATION (VIM) 12. Wide Range Achievement Test (WRAT-R) * * (Can be purchased from ADD Warehouse) 13) Myth-conceptions a. Medication should be stopped when a child reaches teen years. Research clearly shows that there is continued benefit to medication for those teens who meet criteria for diagnosis of ADD. b. Children build up a tolerance to medication. Although the dose of medication may need adjusting from time to time there is no evidence that children build up a tolerance to medication. c. Taking medication for ADD leads to greater likelihood of later drug addiction. There is no evidence to indicate that ADD medication leads to an increased likelihood of later drug addiction. d. Positive response to medication is confirmation of a diagnosis of ADD. The fact that a child shows improvement of attention span or a reduction of activity while taking ADD medication does not substantiate the diagnosis of ADD. Even some normal children will show a marked improvement in attentiveness when they take ADD medications. e. Medication stunts growth. ADD medications may cause an initial and mild slowing of growth, but over time the growth suppression effect is minimal if non-existent in most cases. f. Taking ADD medications as a child makes you more reliant on drugs as an adult. There is no evidence of increased medication taking when medicated ADD children become adults, nor is there evidence that ADD children become addicted to their medications. g. ADD children who take medication attribute their success only to medication. When self-esteem is encouraged, a child taking medication attributes his success not only to the medication but to himself as well. NOTE: this section was lifted from an article published in the Fall 1991 Chadder titled "Medical Management of Children with ADD Commonly Asked Questions" by Parker et al. |14) Are there any support groups? Yes. Largest is CHADD. CHildren & Adults with Attention Deficit Disorder National Office 499 N.W. 70th Ave. Suite 308 Plantation, Florida 33317 Phone 305-587-3700 Fax 305-587-4599 LDA Learning Disabilities Association 4156 Library Road Pittsburg, Pennsylvania 15234 15) Is there a good commercial source for information? Yes. ADD Warehouse. 1-800-233-9273 (US only) Phone 305-792-8944 Fax 305-792-8545 16) Are there any internet resources? Yes. There is an ADD parents mail list. Requests to listserv@n7kbt.rain.com. To subscribe send email to above address with body of message as follows: subscribe add-parents YOUR-NAME Welcome to the ADD parent's mailing list. This forum is a way for parents of children with Attention Deficit/Hyperactivity Disorder to connect with each other and share information and support. To send mail to the others on the list, mail to add-parents@n7kbt.rain.com To contact the list administrator (Deborah J. Ruppert), send mail to phoenix@n7kbt.rain.com 16) Books on ADD. This is the author's personal list (maybe we can have a net vote if there is enough interest). Ranked in order of preference. a. "Why Johnnie Can't Concentrate - Coping with Attention Deficit Problems" Robert A. Moss, Bantam, 1990, ISBN 0-553-34968-6 , PB, (p. 203) b. The Children`s Hosp. of Philadelphia - "A Parents Guide to ADD" Lisa J. Bain, Delta ,1991, ISBN 0-385-300031-X, PB, (p. 216) c. "COPING ADD" Mary Ellen Beugin, Detselig Enterprises, Calgary, Alberta, 1990, ISBN 1-55059-013-8, PB, (p. 173) d. "If your child is hyperactive, inattentive, impulsive, distractible...helping the ADD hyperactive child" S & M Garber, 1990, villard ny, ISBN 0-394-57205-x, HB, (p. 235) e. ADDH Revisited "A concise source of info for parents & teachers" H. Moghadam, Detselig, ISBN 0-920490-78-6, 1988, PB, (p. 101) f. (PAMPHLET) "A Parents guide to ADHD". g. (Paper) "Controversial Treatments For Children With ADHD" S. Goldstein Ph.D & B. Ingersoll Ph.D. 18. ADD in Adults? Adult ADD (ADD-RT) appears to be getting much more visibility in the media. SUGGESTED DIAGNOSTIC CRITERIA FOR ATTENTION DEFICIT DISORDER IN ADULTS by Edward M. Hallowell, MD and John J. Ratey, MD Note: These criteria are based on extensive clinical experience but have not yet been statistically validated by field trials. Note: Consider a criterion met only if the behavior is considerably more frequent than that of most people of the same mental age. A. A chronic disturbance in which at least twelve of the following are present: 1. a sense of underachievement, of not meeting one's goals (regardless of how much one has accomplished). We put this symptom first because it is the most common reason an adult seeks help. "I just can't get my act together," is the frequent refrain. The person may be highly accomplished by objective standards, or may be floundering, stuck with a sense of being lost in a maze, unable to capitalize on innate potential. 2. difficulty getting organized. A major problem for most adults with ADD. Without the structure of school, without parents around to get things organized for him or her, the adult may stagger under the organizational demands of everyday life. The supposed "little things" may mount up tp create huge obstacles. For the want of a proverbial nail--a missed appointment, a lost check, a forgotten deadline --their kingdom may be lost. 3. chronic procrastination or trouble getting started. Adults with ADD associate so much anxiety with beginning a task, due to their fears that they won't do it right, that they put it off, and off, which, of course, only adds to the anxiety around the task. 4. many projects going simultaneously; trouble with follow-through. A corollary of #3. As one task is put off, another is taken up. By the end of the day, or week, or year, countless projects have been undertaken, while few have found completion. 5. tendency to say what comes to mind without necessarily considering the timing or appropriateness of the remark. Like the child with ADD in the classroom, the adult with ADD gets carries away in enthusiasm. An idea comes and it must be spoken, tact or guile yielding to child-like exuberance. 6. an ongoing search for high stimulation. The adult with ADD is always on the lookout for something novel, something in the outside world that can catch up with the whirlwind that's rushing inside. 7. a tendency to be easily bored. A corollary of #6. Boredom surrounds the adult with ADD like a sinkhole, ever ready to drain off energy and leave the individual hungry for more stimulation. This can easily be misinterpreted as a lack of interest; actually it is a relative inability to sustain interest over time. As much as the person cares, his battery pack runs low quickly. 8. easy distractibility, trouble focusing attention, tendency to tune out or drift away in the middle of a page or a conversation, often coupled with an ability to hyperfocus at times. The hallmark symptom of ADD. The "tuning out" is quite involuntary. It happens when the person isn't looking, so to speak, and the next thing you know, he or she isn't there. The often extraordinary ability to hyperfocus is also usually present, emphasizing the fact that this is a syndrome not of attention deficit but of attention inconsistency. 9. often creative, intuitive, highly intelligent. Not a symptom, but a trait deserving of mention. Adults with ADD often have unusually creative minds. In the midst of their disorganization and distractibility, they show flashes of brilliance. Capturing this "special something" is one of the goals of treatment. 10. trouble going through established channels, following proper procedure. Contrary to what one might think, this is not due to some unresolved problem with authority figures. Rather it is a manifestation of boredom and frustration: boredom with routine ways of doing things and excitement around novel approaches, and frustration with being unable to do things the way they're supposed to be done. 11. impatient; low tolerance for frustration. Frustration of any sort reminds the adult with ADD of all the failures in the past. "Oh no," he thinks, "here we go again." So he gets angry or withdraws. The impatience has to do with the need for stimulation and can lead others to think of the individual as immature or insatiable. 12. impulsive, either verbally or in action, as in impulsive spending of money, changing plans, enacting new schemes or career plans, and the like. This is one of the more dangerous of the adult symptoms, or, depending on the impulse, one of the more advantageous. 13. tendency to worry needlessly, endlessly; tendency to scan the horizon looking for something to worry about alternating with inattention to or disregard for actual dangers. Worry becomes what attention turns into when it isn't focused on some task. 14. sense of impending doom, insecurity, alternating with high- risk-taking. This symptom is related to both the tendency to worry needlessly and the tendency to be impulsive. 15. mood swings, depression, especially when disengaged from a person or a project. Adults with ADD, more than children, are given to unstable moods. Much of this is due to their experience of frustration and/or failure, while some of it is due to the biology of the disorder. 16. restlessness One usually does not see, in an adult, the full-blown hyperactivity one may see in a child. Instead one sees what looks like "nervous energy": pacing, drumming of fingers, shifting position while sitting, leaving a table or room frequently, feeling edgy while at rest. 17. tendency toward addicitive behavior. The addiction may be to a substance such as alcohol or cocaine, or to an activity, such as gambling, or shopping, or eating, or overwork. 18. chronic problems with self-esteem. These are the direct and unhappy result of years of conditioning: years of being told one is a klutz, a spaceshot, an underachiever, lazy, weird, different, out of it, and the like. Years of frustration, failure, or of just not getting it right to do lead to problems with self-esteem. What is impressive is how resilient most adults are, despite all the setbacks. 19. inaccurate self-observation. People with ADD are poor self-observers. They do not accurately gauge the impact they have on other people. This can often lead to big misunderstandings and deeply hurt feelings. 20. Family history of ADD or manic-depressive illness or depression or substance abuse or other disorders of impulse control or mood. Since ADD is genetically transmitted and related to the other considerations mentioned, it is not uncommon (but not necessary) to find such a family history. B. Childhood history of ADD (It may have been formally diagnosed, but in reviewing the history the signs and symptoms were there. C. Situation not explained by other medical or psychiatric condition. It cannot be stressed too firmly how important it is not to diagnose oneself. From the information and examples presented here it is hoped that your suspicion may be raised, but an evaluation by a physician to rule out other conditions is essential.