FREQUENTLY ASKED QUESTIONS ABOUT ALT.SUPPORT.ATTN-DEFICIT
1. Introduction
2. What is Attention Deficit Hyperactivity Disorder?
3. How is it diagnosed?
4. What is the purpose of ASAD?
5. Who's the moderator on this board/list?
6. Why do some of the posts seem so ANGRY?
7. I think this whole ADD thing is a bunch of baloney! Why
are you all so defensive?
8. Isn't anybody interested in talking about anything besides
Ritalin here?
9. I've got a Great New All-Natural, Non-Drug Cure for
ADD you people should try; is it okay if I just post a few messages?
10. Why is everyone so negative about non-drug alternatives?
11. What's this stuff about "trolls?"
12. If trolls are just posting for their own amusement,
why not just ignore them?
13. Why do people here react so negatively to Scientology?
14. How can I find out more about ADD?
15. Thanks to...
16. Who is Joe Parsons, anyway??
17. Appendix
Welcome to Frequently Asked Questions about alt.support.attn-deficit. It is administered by Joe Parsons (jmp@cyber-mall.com) and posted weekly to the newsgroup. It is also available at the Unofficial ASAD Website, www.cyber-mall.com/asad. Comments, corrections and suggestions are *always* welcome and encouraged.
The author disclaims any responsibility for the information contained in this document, although it was believed accurate as of the time of posting. It is not to be considered an authoritative work on the diagnosis of or treatment for attention deficit hyperactivity disorder.
Permission is hereby granted to republish, repost, e-mail or reproduce this document by any means, with the express condition that it be published, posted or transmitted in its entirety, with no alterations or abridgments whatsoever.
©1996, 2000, Joe Parsons
This short document will introduce you to the informal electronic gathering of folks we call alt.support.attn-deficit ("ASAD"). It will provide a brief introduction to the collection of symptoms and behaviors called Attention Deficit Hyperactivity Disorder ("ADHD"), but it is not intended as any sort of treatise on diagnosis, treatment or management of ADHD. That is best left to your doctor.
Although the disorder is called "Attention Deficit HYPERACTIVITY Disorder," it is widely referred to as Attention Deficit Disorder," or "ADD." I will use the term "ADD" throughout this document. Please do not rely EXCLUSIVELY on anything in this document or for that matter, anywhere on the Internet. When all is said and done, a newsgroup like ASAD can be characterized as a gathering of people who have some things in common--an interest in ADD, in this case. Just as in The Real World(tm), some people are nice, while others are not so nice. Some people are clearly well informed, while others demonstrate an astonishing degree of ignorance. Some are here to help, while others harass, insult, demean and mislead. It is up to each individual participant to decide who fits into which category. Just like The Real World(tm).
2. WHAT IS ATTENTION DEFICIT HYPERACTIVITY DISORDER?
Attention Deficit Hyperactivity Disorder is considered to be a neuro-biological condition whose primary symptoms are distractibility, impulsiveness and restlessness. The condition is frequently observed in school-age children as an inability to pay attention or complete classwork, often (but not always) accompanied by high-energy, disruptive behavior. In adults, ADD tends to manifest itself as inattentiveness, absent-mindedness, impulsiveness, lack of follow-through, restlessness and an elastic perception of time. These behaviors may have led to poor performance in school and in the workplace, and low self esteem and clinical depression frequently travel hand-in-hand with ADD.
The specific criteria can be found in the Diagnostic and Statistical Manual of Psychiatric Disorders, Revision 4 (DSM-IV), published by the American Psychiatric Association (see appendix I) Although there is at present no definitive, psychometric test to confirm conclusively a diagnosis of ADD, the diagnostic process is systematic and specific. Additionally, there has been some promising research involving PET (positron emission tomograph) scans and fMRI (functional Magnetic Resonance Imaging) indicating that ADHD brains may exhibit less activity in the prefrontal-lobe and striatal regions, which affect attention, impulsivity and motor activity. The American Academy of Pediatrics has published guidelines for diagnosis; they are at www.aap.org/advocacy/releases/mayadhd.htm and www.aap.org/policy/ac0002.html
4. WHAT IS THE PURPOSE OF ASAD?
The newsgroup was created by and exists for people who have been affected by ADD. This includes those who have been diagnosed with ADD, whose spouses have ADD, who suspect they may have it, and teachers and parents of ADD children. Participants come to ASAD to receive and to offer support; there are discussions about research, diagnosis and treatment, attitudes toward ADD, coping strategies, expressions of frustration, outrage or joy, and the occasional venting of spleens.
Newcomers to ASAD sometimes remark that there is a great deal of off-topic "chatter" in the newsgroup. As distracting as the frequent off-topic excursions may be to some, there has been a consensus over the years that these digressions are as important a part of this electronic community as the specifics of dealing with the many aspects of ADD. It is not at all unusual to see a topic of conversation ("thread") evolve in unexpected directions, often having nothing at all to do with the original topic or, for that matter, with ADD. Judging from the positive reception, these kinds of off-topic discussions are well accepted as an expression of camaraderie.
ADDers often have a different way of perceiving the world and of expressing themselves, and consequently many of the participants in ASAD have been "outsiders" in the world. Being in the company of kindred spirits (even if only electronically) is every bit as important a support lifeline for many of us as receiving hard data about ADD.
5. WHO'S THE MODERATOR ON THIS BOARD/LIST?
There is no "moderator" as such. A *newsgroup* like ASAD is NOT a bulletin board service (BBS) like CompuServe or America Online. It is not a mailing list, even though you may use the same software to read it as you use to read e-mail. The distinction is important because, unlike a private, moderated conference or mailing list, the discussions on ASAD are *very* public, open to whoever wants to participate. The absence of a moderator does not reduce individual responsibility for proper conduct; just as one is expected to behave appropriately in the "real world," there are expectations in newsgroups--particularly in ASAD. We *hope* you'll behave with courtesy, civility and compassion, just as we are sure you do in the real world, where we can see your face.
Contrary to what some people profess to believe, there are real people behind the words on the screen: people who are dealing with real problems. Support groups exist to provide a place for people to deal with a problem or condition--not to make them an easier target for derision. Our asking you to behave politely and compassionately does not comprise censorship.
6. WHY DO SOME OF THE POSTS SEEM SO ANGRY?
ASAD was created by and for people with a keen interest in the topic of dealing with ADD--their own, and that of people they care about. Some may have other agendas, posting insulting and harassing messages, apparently for their own amusement at the expense of others. Others may deny the existence of ADD, instead blaming parents or teachers. Some may claim (without evidence) that the medications commonly prescribed for ADD are addictive, dangerous, or that they are being "force fed" to children as a means of "chemical behavior control." Sometimes they have products to sell--"ALL-NATURAL TREATMENT FOR ADD!!!" Others may post from a belief that ADD is nothing more than a "fad diagnosis" used as an excuse for poor parenting, television, incompetent teachers or adult irresponsibility.
While there is nothing to prevent anyone from making extravagant or untrue statements in ASAD, it should not come as a surprise if the reception is less than cordial--even hostile. It is important to recognize, too, that some "questions" are really statements--and those statements may be perceived as insulting and judgmental. "How can I manage my child's ADD?" is a simple request for information. "How can I avoid cramming these addictive narcotics like Ritalin down my child's throat?" is really a statement--one that is likely to evoke a hostile response.
Sometimes, there may be a kind of "spillover" effect. If there has been an argument with a troll or "salescritter" earlier, some participants may still be reacting to an excess of adrenaline, and have the newsgroup equivalent of an "itchy trigger finger." If you find yourself affected by this "spillover," try to keep in mind that you may not have done anything to "deserve" the occasional hostile reaction. The same thing happens in The Real World(tm).
7. I THINK THIS WHOLE ADD THING IS A BUNCH OF BALONEY! WHY ARE YOU ALL SO DEFENSIVE?
Many ADD people have been wrestling with the ignorance of others all their lives. If you post a message claiming that ADD is just a "myth" or an "excuse," you should back up your statements with solid, documentable facts. Hint: the following phrases are not considered "facts" or "proof:"
"It's just common sense."
"Everybody knows."
"I heard about an [unspecified] article that said..."
"A [unnamed] doctor at a leading hospital says..."
"My neighbor's sister says..."
On the contrary: those phrases may cause you to be branded an idiot.
8. ISN'T ANYONE INTERESTED IN TALKING ABOUT ANYTHING BESIDES RITALIN HERE?
Occasionally, someone claims that there is some sort of "Pro-Medication Lobby" of people who are interested only in taking drugs for ADD to the exclusion of any other approaches. They claim that anyone trying to discuss non-pharmaceutical approaches will be attacked. There have been heated discussions about some of the medications commonly used in the treatment and management of ADD. Many of these discussions have started with a statement like, "Ritalin is a dangerous drug that should not be given to children." People saying things like this (often in an effort to sell a product or advance an agenda) are typically unable or unwilling to provide any credible documentation or research to support their claims. Many of the threads involving such topics come from efforts to clear up incorrect or misleading statements.
Although the drug Ritalin (Novartis Pharmaceuticals' brand of methylphenidate hydrochloride) is the most widely-used pharmaceutical treatment for ADD, there are several other medications that a physician may prescribe; there are at least four other stimulants and several antidepressants that have been used successfully. Ritalin, because it is so well known, may simply present a larger target for criticism; there are comparatively few negative posts about the other medications that are used in the treatment and management of ADD, and just as with other important matters, you should ultimately rely on your doctor's advice--not the conversation on the newsgroup.
ASAD receives between 75 and 120 posts a day. During the course of a week, there may be discussions with headings like
Adult ADHD assessment
TOVA
Homeschooling
ADHD & ODD
ADD/ADHD Adults and Lawsuits (Employment Discrimination - Hiring, firing,...)
Time Out as Punishment
How do you curb effects of burnout?
ADHD...genetic???
ADD training for therapist?
This Caged Animal Thing
Girlfriend has ADD
In ASAD, as in other newsgroups, you are free (and encouraged) to start a thread yourself by making a post of your own.
9. I'VE GOT A GREAT NEW ALL-NATURAL, NON-DRUG CURE FOR ADD YOU PEOPLE SHOULD TRY; IS IT OKAY IF I JUST POST A FEW MESSAGES?
Because ASAD is an unmoderated newsgroup, there is nothing to stop you from posting almost anything you wish. You should be aware, however, that many users will take offense at your advertisement. This in itself may not bother you, but most Internet Service Providers (ISPs) have "Terms of Service" that may consider your advertisement to be a violation.
You can safely assume that if you post an advertisement for your "Great New All-Natural, Non-Drug Cure for ADD" there will be letters of complaints to your ISP, who *may* consider that your advertisement is grounds for terminating your account. If your first and only appearance in this newsgroup has been to sell your product, many of the regular participants will suspect that this is your only reason for being here.
You can also safely assume that most who might consider "alternative" treatments have already done so--ADD people (and parents or spouses of ADD people) are *very* good at research. If you do hope to talk about a product that you are trying to sell, you should be prepared to field some pointed questions about the efficacy of your product.
In the past, the would-be purveyors of "alternatives" have relied on third-party testimonials ("...a friend of my sister-in-law had a hyperactive child, and..."). This kind of sales approach is likely to be greeted with scorn. ASAD was formed as a *discussion* group, and people who post *only* in the hopes of selling their products have not been well received.
10. WHY IS EVERYONE SO NEGATIVE ABOUT NON-DRUG ALTERNATIVES?
In almost every case, people eager to discuss (or "share information about") vitamins, herbs and other food supplements are distributors for these products. Apart from the fact that sales activity is generally unwelcome in newsgroups like ASAD, there has been NO credible evidence to indicate that antioxidants like Pycnogenol© or "blue green algae" will have the slightest effect on the symptoms of ADD. Moreover, since ADD involves neurotransmitters like dopamine (the "wiring" in the brain), there is no biochemical reason why an antioxidant or vitamin preparation *should* have any effect on the symptoms of ADD.
The people promoting these products have so far been unable to provide or point to any credible sources of data substantiate their claims.
11. WHAT'S THIS STUFF ABOUT "TROLLS?"
There has been some misunderstanding about the term, but the "New Hacker's Dictionary," widely considered authoritative, defines the verb "Troll" as
To utter a posting on Usenet designed to attract predictable responses or flames.
Derives from the phrase "trolling for newbies" which in turn comes from mainstream
"trolling," a style of fishing in which one trails bait through a likely spot hoping for
a bite.
You can find the entire text of this interesting document at http://info.astrian.net/jargon/terms/t/troll.html
12. IF TROLLS ARE JUST POSTING FOR THEIR OWN AMUSEMENT, WHY NOT JUST IGNORE THEM?
Conventional wisdom suggests that the best way to deal with a Troll is to avoid giving them the satisfaction of getting the "outraged response" he or she is seeking. A number of longtime participants, however, have taken the position that allowing misinformation to stand unchallenged could cause harm.
13. WHY DO PEOPLE HERE REACT SO NEGATIVELY TO SCIENTOLOGY?
The "Church of Scientology" has a stated agenda to eliminate psychiatry by the year 2000. The doctrine of the "church" and its practices involves a fee-for-services process called "auditing" which, they claim, has benefits superior to mainstream medical practice. Statements made by the "church" and its adherents with respect to ADD and its treatment are demonstrably false and misleading.
Some have theorized that the "church" objects to mainstream treatment for ADD (and other psychiatric disorders) because it competes with their "auditing" ritual and paid "courses."
There is more information about Scientology at www.xenu.net. You may also see references to a "front" organization for Scientology, "Citizens' Commission on Human Rights," commonly referred to as "CCHR." Its objectives and misleading tactics are aligned with those of its parent organization.
14. HOW CAN I FIND OUT MORE ABOUT ADD?
There's no shortage of resources; if you do a web search on ADD or ADHD, you'll turn up lots of places to go. There is a non-profit organization called CH.A.D.D (Children and Adults with A.D.D.) that has a homepage at www.chadd.org. You'll find many useful links from their page. (PLEASE NOTE: while some participants in the newsgroup may be members of CH.A.D.D., alt.support.attn-deficit is in NO WAY affiliated with or supported by CH.A.D.D.)
You should also keep in mind that there is no one overseeing the content placed in the Web, and a search on "Attention Deficit Disorder" is likely to turn up as much false and agenda-driven information as useful data. It is important to be cautious and critical about content on the Internet. Other useful sites:
add.about.com Bob Seay's truly excellent site--clearly a labor of love on Bob's part.
www.add.org The site of the National ADD Association
www.mythical.net Thom Hartmann's intriguing site. He wrote the influential "ADD: A Different Perception" This site is in the same vein as Thom's other thoughtful (and thought-provoking) books.
www.addvance.com Author-therapist Dr. Kathleen Nadeau's site. She characterizes it as "An online resource for women and girls with attention deficit disorder. Dr. Nadeau is *highly* recommended by Nessa, who has known and worked with her for years.
There are some excellent books on the topic of ADD and its management. Some of the titles you'll see mentioned are
"Driven to Distraction," by Edward M. Hallowell, M.D.
"You Mean, I'm Not Lazy, Stupid or Crazy?!" by Peggy Ramundo and Kate Kelly
"ADD: A Different Perception," by Thom Hartmann
Adventures in Fast Forward by Dr. Kathleen G. Nadeau
Add in the Workplace by Dr. Kathleen G. Nadeau
There are lots more; hang around the newsgroup and you'll hear about them--or feel free to ask.
15. THANKS TO... This document could not have been prepared
without the direct and indirect contributions of
Ann Campbell
Chandra Chandrasekaran
D.C. and M.V. Sessions
Dave Knapp
Jennifer Snow Wolff
John Palmer
Mark Morin
Mark Probert
Nessa
The author is indebted to Arthur Byrne, whose FAQ-writing advice was invaluable. He is especially grateful to the many "regulars" in alt.support.attn-deficit who give so extravagantly of themselves in reaching out to others. He has also received some valuable feedback from a small number of people who say they hate his guts.
16. WHO IS JOE PARSONS, ANYWAY?? Joe Parsons is a writer living and working in the San Francisco Bay Area. Since being a writer is just one small step away from being unemployed, he spends as much time as he can manage sailing "Good Faith" out of Berkeley, California. One of the great epiphanies of his life was reading Ned Hallowell's "Driven to Distraction;" he still thinks it was written about him. He can be reached at jmp@cyber-mall.com
I. DIAGNOSTIC AND STATISTICAL MANUAL OF PSYCHIATRIC DISORDERS, REVISION IV (DSM-IV) These are the "official" diagnostic criteria for ADHD. You can find them at lib-sh.lsumc.edu/fammed/intern/adhd.html.
II. "Surviving Usenet: A Guide for the Earnest Newcomer" by Joe Parsons A concise introduction to the practice and culture of Usenet newsgroups. It is posted regularly as a companion to this FAQ.
III. "MYTHS, LIES, MISUNDERSTANDINGS--AND FACTS--ABOUT RITALIN" Posted weekly as a companion to the FAQ.
IV. "The 'Secret' of CHADD's support from Ciba-Geigy (Novartis)" Debunking some disinformation about the relationship between the largest ADD support and advocacy organization and the manufacturer of the drug methylphenidate (Ritalin). Posted weekly as a companion to the FAQ.
FAQ Revision History: 5/6/00: First major revision 3/19/96: Initial publication