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Subject: Attention Deficit Disorder FAQ (long FK version)

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INTRODUCTION: This is part one of the one part official Frequently Asked Questions (FAQ) document for alt.support.attn-deficit (ASAD). --------------------------------------------------------------------------- PART 1: Attention Deficit Disorder Index: Q099) FAQ Web site Q100) History of this FAQ. Q101) What is Attention Deficit Disorder? Q102) What are some common symptoms of ADD/ADHD? Q103) How is ADD diagnosed? Q104) Is this a new disease? Q105) What other names has this disease been known by? Q106) What causes ADD (Etiology)? Q107) What is the long term prognosis? Q108) Are there other complications of this disease? Q109) What treatment is there for ADD? Q110) What are some Controversial treatments for ADD? Q111) What medications can be used in treatment? Q112) What about caffeine? Q113) What are some monitoring tools/scales? Q114) What are some myth-conceptions? Q115) Are there any support groups? Q116) Is there a good commercial source for information? Q117) Are there any network or computer based resources? Q118) What are some Parenting Tricks and Tips? (Strate- gies) Q119) Are there any good books on ADD? Q120) ADD in Adults? Q121) What are some diagnostic criteria for Adult ADD? Q122) Who do I believe? Q123) What can I as a teacher do? Q124 Disclaimer --------------------------------------------------------------------------- Q099) Web site For more information on ADD (Attention Deficit Disorder) please visit "The WWW ADD FAQ Site". This meant to be a relatively static site for information purposes for teachers, parents, medical community and adults interested in a general overview on the topic of ADD. The site is located @ <URL:http://www3.sympatico.ca/frankk> The author of the site can be reached via email at: frankk@sympatico.ca Q100) History of the FAQ. This FAQ was initially written by frankk@Canada.sun.com (Frank Kannemann). Q101) What is Attention Deficit Disorder? Attention Deficit Disorder (ADD) is a syndrome which is usually characterized by serious and persistent difficulties resulting in: poor attention span weak impulse control hyperactivity (not in all cases) ADD also has a subtype which includes hyperactivity (ADHD). It is a treatable (note not curable) complex disor- der which affects approximately 3 to 6 percent of the pop- ulation (70% in relatives of ADD children). Inattentiveness, impulsivity, and often times, 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 with- out hyperactivity is also known as ADD/WO (Without) or Undifferentiated ADD. Q102) What are some common symptoms of ADD? a. Often fails to give close attention to details or makes careless mistakes in schoolwork, work, or other activities b. Often has difficulty sustaining attention in tasks or play activities c. Often does not seem to listen when spoken to directly d. Often does not follow through on instructions and fails to finish schoolwork, chores, or duties in the workplace (not due to oppositional behavior or failure to understand instructions) e. Often has difficulty organizing tasks and activities f. Often avoids, dislikes, or is reluctant to engage in tasks that require sustained mental effort (such as homework) g. Often loses things necessary for tasks or activities (toys, school assignments, pencils, books, or tools) h. Is often easily distracted by extraneous stimuli i. Is often forgetful in daily activities Q103) How is ADD diagnosed? The list above is taken directly from the DSM-IV Diagnostic Criteria for ADD. Please see http://lib-sh.lsumc.edu/fammed/intern/adhd.html To qualify for a diagnosis of ADHD, someone must exhibit 6 of these symptoms for a period longer than 6 months - and must affect the person negatively considering their level of development. EEG abnormalities can appear in up to 50% of ADD children (not used in diagnoses). How- ever, you don't have to be hyperactive to have 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. Q104) Is this a new disease? No. It had been identified in medical literature more than 100 years ago. A popular German tale (Hoffmann's tStru- wel Peterv) written in rhyme for children portrays a child with ADHD. Q105) 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). Q106) What causes ADD (Etiology)? A single cause has not been conclusively proven (idio- pathic). Some possibilities are: Genetic/ Hereditary (stongest correlation) Brain damage (head trauma) before, after or during birth (twice as likely to have had labour> 13hrs) Brain damage by toxins (internal: bacterial and viral, external: fetal alcohol syndrome, metal intoxication, e.g. lead) Strongly held belief by some people (including at least one book, Feingold's Cookbook for Hyperactive chil- drenv) that food allergies cause ADD. This has *not* been proven scientifically. Q107) What is the long term prognosis? One book states 20% outgrow it by puberty but other prob- lems can interfere. ADD that lasts into Adulthood is referred to as ADD-RT (Residual Type). Q108) 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 Tourettefs) in 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) Q109) What treatment is there for ADD? No simple treatment. Must be a multi-modal approach including (but not limited to): Medication Training of parents Counselling/training of child including behavior mod- eling, self-verbalization and self-reinforcement. Special education environment Q110) What are some controversial ADD Treatments? This section was condensed from an article "Controver- sial Treatments for Children with ADHD" By S. Goldstein Ph.D. & B. Ingersoll Ph.D. 1. Dietary Intervention. The changing of a childFs diet to prevent ADHD. Conclusion: No scientific evidence of effectiveness. Alternate opinions: http://www.kidsource.com/feingold/index.html http://www.kidsource.com/kidsource/ content/news/Diet_ADD_article.html 2. Megavitamin and Mineral Supplements. The use of very high does of vitamins and/or minerals to treat ADHD. Conclusion: No scientific evidence of effectiveness. 3. 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. 4. 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. 5. 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. 6. Applied Kinesiology (Chiropractic approach). This theory believes that Learning Disabilities are caused by 2 specific bones in the skull. Conclusion: No scientific evidence of effectiveness. 7. Optometric Vision Training. This proposes that reading related Learning Disabilities are caused by visual problems. Conclusion: No scientific evidence of effectiveness. Q111) What medications can be used in treatment? This is a constantly evolving area. The current line of thinking appears to be to treat Adults first with Antide- pressants and children (depending on symptoms) with Stimulants. The 2 main lines of attack are with Stimulants and Antidepressants with the remainder of the drugs gen- erally used as adjuncts. The drugs are listed as trade name (and chemical name in brackets). At the time of the writ- ing (4/17/94) of this FAQ and known to this author are: 1. Psychostimulants: Ritalin (methylphenidate) also SR Ritalin (Slow Release) Dexedrine (dextroamphetamine) now also in SR. Cylert (pemoline) 2. Antidepressants (Tricyclic or TCAs) used to treat bed wetting and depression: Tofranil or Janimine (imipramine) Norpramin or Pertofane (desipramine) Pamelor (nortriptyline) principle metabolite of ELavil (amitripyline) Wellbutrin (buproprion) 3. Neuroleptics (adjunct): thioridazine Propericiazine chlorpromazine (unsure of category) 4. Tranquilizers(adjuncts): Mellaril Atarax 5. Impulsive/Tantrums (adjuncts): Corgard (nadolol) Inderal (propranol) 6. Mood stabilizers (adjuncts): Prozac (fluoxetine) BuSpar (Buspirone) Catapres (clonidine) antihypertensive lithium Tegretol (anticonvulsant caramazepine) Depakoate (valproate) Note: None of these (listed in other) have been exten- sively studied for use with children. Q112) What about caffeine? Although caffeine is a stimulant it does not focus specifi- cally enough in the areas of the brain to be effective. The dose required to be effective introduces too many negative side effects. Q113) What are some 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 ChildrenFs Inventory (YCI) 5. Attention Battery (includes Continuous Performance Task, 6. Progressive Maze Test and Sequential Organization Test (SOT). 7. DSM-III-R 8. Wechsler Intelligence Scales for Children (WISC-R) 9. Child Behavior Checklist (CBCL) 10. T.O.V.A - Test of Variables of Attention* 11. Learning Efficiency Test II (LETT-II)* 12. Developmental Test of Visual Motor Integration (VIM) * 13. Wide Range Achievement Test (WRAT-R) * * (Can be purchased from ADD Warehouse) Q114) What are some myth-conceptions about ADD? Note: This section was lifted from an article pub- lished in the Fall 1991 Chadder titled "Medical Management of Children with ADD Commonly Asked Questions" by Parker et al. 1. 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. 2. 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. 3. 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. 4. 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 atten- tiveness when they take ADD medications. 5. 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. 6. 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 evi- dence that ADD children become addicted to their medica- tions. 7. ADD children who take medication attribute their success only to medication. When self-esteem is encouraged, a child taking medica- tion attributes his success not only to the medication but to himself as well. Q115) Are there any support groups? Yes. 1. Children & Adults with Attention Deficit Disorder 499 N.W. 70th Ave.,Suite 308 Plantation, Florida 33317 Phone 1-305-587-3700 Fax 1-305-587-4599 http://www.chadd.org 2. NADDA National Attention Deficit Disorder Association Phone 1-800-487-2282 (not in Canada) Phone 1-216-350-9595 (anywhere) Fax 1-216-350-0023 http://www.add.org 3. LDA Learning Disabilities Association 4156 Library Road Pittsburgh, Pennsylvania 15234 Q116) 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 They have a very nice color catalogue. Q117) Are there any network or computer based resources? 1. Network Yes. There are several sources of information on the net- works. A. INTERNET news group alt.support.attn-deficit. B. COMPUSERVE has an ADD forum Contact COMPUSERVE for more information. I have not used this service. The ADD Forum has many useful files and discussion. Type GO ADD at any prompt. C. Prodigy ADD group Prodigy also has an ADD group, but, as I don't have Prodigy, you'll have to find it yourself. D. World Wide Web http://www3.sympatico.ca/frankk http://www.greatconnect.com/oneaddplace/ http://www.web-tv.co.uk/addnet.html http://www.pavilion.co.uk/add/ E. Adults with ADD mailing list Parents of children with ADD mailing list 2. Mailing list address A. addult - addults with add - Address to use for subscriptions options: listserv@maelstrom.stjohns.edu ( New address Feb 1997 ) - The following commands should be sent to listserv@maelstrom.stjohns.edu ( New address Feb 1997 ) To subscribe to the list SUBSCRIBE ADDULT <Your real name> B. addparents - parents with children with add - Address to use for subscriptions options: listserv@bdtp.com - The following commands should be sent to listserv@bdtp.com To subscribe to the list SUBSCRIBE ADDPARENTS 3. Computer Related A. If you have an Apple II or IBM PC and are a profes- sional the TOVA hardware/software addition is avail- able (contact ADD warehouse). B. If you have an Apple Newton PDA there is a Newton Book available from xxx@nn.com on ADD. Q118) What are some Parenting Tricks and Tips? (Strategies) Fundamentally, parents must understand that much more time/effort has to be invested in raising ADD children.A difficult concept for older generations to accept is that: There is no such thing as a BAD CHILD that lacks DISCIPLINE. ADD children require additional sup- ports/training to enable them to be successful. Here are a few tricks and tips that I have assembled from various sources (including books, seminars and practice). These are by no means applicable to, or useful for all ADD chil- dren. 1. transitioning ADD children have a difficult time adjusting to changes (see item c) whether they be immediate requests or longer term ones. The use of warning children of upcoming changes (i.e.: we are leaving in 5 minutes) can lessen the impact of the change. 2. rules- rewards/consequences The simple act of outlining house rules complete with pun- ishments is the first step in defining behaviors. 3. time-outs These are probably the most widely used form of punish- ments. These have two benefits: removal of the child from the situation and time for contemplation/learning. 4. removal of privileges These should be defined by the parents and identified to the child 5. physical violence (washing mouth with soap, spankings etc.) Any form of physical violence against children is extremely discouraged and generally only reinforces nega- tive behaviors. 6. structure/consistency ADD children seem to be more effective in highly struc- tured environments. Consistency is also a form of struc- ture. 7. deflection/redirection Sometimes rather than facing a situation/behavior directly it may be more useful/timely to refocus the child on to something else. 8. planned ignoring The act of ignoring (but letting the child know that you are deliberately doing it) a child's wants/behaviors when they are inappropriate. This probably should not be used too regularly as it may adversely affect the child's self-esteem. 9. advocacy - education The parent must become an advocate on behalf of their children. Parents must ensure relatives, teachers and peers understand the issues of the child. This may include teach- ing people about ADD. 10. praise This is a very simple but effective method of highlighting things that the child is doing correctly and may include rewards/prizes. 11. meds I get the impression that a lot of uninformed/uneducated people assume that medicating a child is wrong/bad. This may come from the thought that children are being given tranquilizers to slow them down, when, in fact, in most cases the children are being given stimulants. I personally believe that every parent *must* try anything that may help the child (providing, of course, it doesn't harm them). A simple analogy is to that of a child with diabetes. Should the child be denied a chemical that allows is system to function correctly? Q119) What good books are there 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 prefer- ence. 1.Children related: "Why Johnnie Can't Concentrate - Coping with Atten- tion Deficit Problems" Robert A. Moss, Bantam, 1990, ISBN 0-553-34968-6, PB, (p. 203) The Children's Hosp. of Philadelphia - "A Parents Guide to ADD" Lisa J. Bain, Delta,1991, ISBN 0-385- 300031-X, PB, (p. 216) "COPING with ADD" Mary Ellen Beugin, Detselig Enterprises, Calgary, Alberta, 1990, ISBN 1-55059- 013-8, PB, (p. 173) "If your child is hyperactive, inattentive, impulsive, distractible...helping the ADD hyperactive child" S & M Garber, 1990, villard ny, ISBN0-394-57205-x, HB, (p. 235) "ADDH Revisited A concise source of info for parents & teachers" Moghadam, Detselig, ISBN 0-920490-78- 6, 1988, PB, (p. 101) (Paper) "Controversial Treatments For Children With ADHD" S. Goldstein Ph.D & B. Ingersoll Ph.D. 2. Adult related: Driven to Distractionv, Ed Hallowell MD, and John Ratey MD, Pantheon. You Mean I'm Not Lazy, Stupid or Crazy?!, by Kate Kelly and Peggy Ramundo, Tyrel and Jerem Press. Q120) ADD in Adults? Adult ADD (ADD-RT) appears to be getting much more visibility in the media. I am getting more questions on it so I have included this section. Recently C.H.A.D.D Changed its byline to "Children & Adults with Attention Deficit Disorders". This section is probably of interest to those adults diag- nosed with ADD. It maybe be useful for parents of ADD children who may not be aware that maybe they have ADD, Dr. Hallowell is a child psychiatrist at Harvard Medical School who has ADD himself. Attached is a transposed handout from one of his lectures. The handout isn't copy- righted. Hallowell,E. and Ratey, J. Driven to Distraction. Pan- theon, due out in 1994. Q121) 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 experi- ence but have not yet been statistically validated by field trials. Note: Consider a criterion met only if the behavior is con- siderably more frequent than that of most people of the same mental age. 1. A chronic disturbance in which at least twelve of the following are present: 1.1 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. 1.2 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 tlittle thingsv may mount up to create huge obstacles. For the want of a proverbial nail--a missed appointment, a lost check, a forgotten deadline --their kingdom may be lost. 1.3 chronic procrastination or trouble getting started. Adults with ADD associate so much anxiety with begin- ning 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. 1.4 many projects going simultaneously; trouble with fol- low-through. A corollary of tcv. 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 com- pletion. 1.5 tendency to say what comes to mind without necessar- ily 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 exu- berance. 1.6 an ongoing search for high stimulation. The adult with ADD is always on the lookout for some- thing novel, something in the outside world that can catch up with the whirlwind that's rushing inside. 1.7 a tendency to be easily bored. A corollary of tfv. 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. 1.8 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 hyperfo- cus at times. The hallmark symptom of ADD. The ttuning outv 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 syn- drome not of attention deficit but of attention inconsis- tency. 1.9 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 tspecial somethingv is one of the goals of treatment. 1.10 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 thin- ness way they're supposed to be done. 1.11 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, there 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. 1.12 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 dan- gerous of the adult symptoms, or, depending on the impulse, one of the more advantageous. 1.13 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. 1.14 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. 1.15 mood swings, depression, especially when disengaged from a person or a project. Adults with ADD, more than children, are given to unsta- ble moods. Much of this is due to their experience of frus- tration and/or failure, while some of it is due to the biology of the disorder. 1.16 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 fre- quently, feeling edgy while at rest. 1.17 tendency toward addictive 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. 1.18 chronic problems with self-esteem. These are the direct and unhappy result of years of condi- tioning: 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 do lead to problems with self-esteem. What is impressive is how resilient most adults are, despite all the setbacks. 1.19 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. 1.20 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. 2. Childhood history of ADD (It may not have been for- mally diagnosed, but in reviewing the history the signs and symptoms were there.) 3. 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 pre- sented here, it is hoped that your suspicion may be raised, but an evaluation by a physician to rule out other condi- tions is essential. Q122) Who do I believe? Teachers? Doctors? or Myself? Become your own expert. Learn all you can about ADD. Q123) What can I as a teacher do? These are some thoughts from a parent: 1. learn more about ADD and behavior management 2. maintain a communications booklet with parents 3. get a copy of the Add in the Classroom book from CHADD. And see the sample 504 Accommodation plan. Q124) DISCLAIMER COPYRIGHT STUFF: ---------------- (c) 2000 Keith ODonnell