Since a couple of threads appear to have been closed via the complaints of the usual ADHD censors, I’d like to take up this topic again here.
On one of those threads, poster JenM offered the following (apparently in good faith):
“Of course, people should not make a decision based merely on others’ anectdotes but it helps to know what others are going through…
“I will take this a step further and say (once again, strictly my opinion) that I see the decision to medicate or not (in my case) similar to the decision to medicate my older child for asthma. She takes asthma medication every day and it has allowed her to breathe better.”
JenM’s point #1, seems sensible enough, until you reflect on the real world of “what people should do and what they ACTUALLY do”. As I have mentioned before, there exists an entire message board on the subject of ADHD, whose members freely swap “recipes” for drugging a child. People SHOULDN’T do that, but they do. On that board, people who question this practice are banned, leaving only the recipe-swappers. Newcomers to the ADHD drug decision-making scene may accept this practice as correct, just as the board’s existing members have. It is, of course, far from being correct, however, that point does not preclude “people” from accepting the anecdotal advice offered there as fact or worse, “something to try this week”. The board’s administrator has claimed in a sticky thread (always at the top of the medication thread pile) that the board’s members may rightfully claim to “have written the book on Strattera medicating”. Nobody has posted anything to date that would conflict the abject nonsense in that statement. Then again, nobody is permitted to. So, people DO make decisons based on anecdotes found on these boards, whether the “advice” is invited or not. they SHOULDN’T JenM, but they DO! If you have any sense of responsibility you will never offer anecdotal advice (for that is what it translates into, no matter the name you want to give it) to what are sometimes very confused and desperate parents. You post that the decision to medicate is a very personal one. Why not then keep it that way? Why not then post anecdotes that talk of general successes (without the accompanying unverified reasons for those successes) and give these parents something that most appear to be sadly lacking - HOPE!
Jenm’s point #2 is a case in point of really skewed reasoning being presented to parents, who may or may not accept it as fact.
Asthma is a medical condition, scientifically proven to exist, to have detailed physiological causes and scientifically-proven treatments. “ADHD”, unfortunately, can boast none of the above. Asthma is a medical condition. “ADHD” is a bundle of normal symptoms of childhood that are unscientifically labelled a “disorder” based solely upon how the degree of those symptoms affect people in power. In short, “ADHD” never affects its patient (i.e. no child suffering “ADHD” ever complained about doing so) but those who have power over the patient backed by those who stand to profit by it. You may not accurately compare any medical condition with the outside subjective analysis of a child’s degree of childishness.
On the other thread another “Guest” wrote that I was guilty of censorship when I wrote “Expect miracles, but don’t post about them here”. That’s not censorship. Censorship, by its very nature, involves having the power to censor. I have no power to censor posts on this board. The “guest” was apparently slumming it here in the free world for a brief spell from the other board, which does wholly indulge in censorship. There’s a difference between a poster’s right of freedom of expression and censorship. JenM would never have to agree with my remarks nor follow their instructions. That line was intended as a direction towards, what in my OPINION, would be a more helpful discussion environment. I felt that JenM (and many others) needed that direction.
So, is anecdotal “evidence” or advice, offered on these boards, of any real help to others? Or, may those anecdotes be compared with the “Personal Testimonies” offered on “Weight Loss” and “Riches With No Money Down” infomercials? Way, way, way, way, way, way less than half the story?
Re: Anecdotal "evidence", does it hurt or help?
Brian, I stick by my request that you do not use my posts to start your topics. However, I apologize to you and everybody else here. I should not have reacted as I did to your question.
Re: Anecdotal "evidence", does it hurt or help?
JenM,
First, your anecdotes were sampled because they were the topic of another discussion that wound up being “locked” due to “complaints being made by blah, blah blah…”
I am interested in continuing the discussion of anecdotal “evidence” and its merits. I used your anecdotes due to the above and the fact that they are very dangerous. In the previous discussion, I pointed out how your post STATED that your daughter was cured of dyslexia by using meds. You may excuse yourself however you want, but that’s what you stated. I used that as evidence that anecdotal posts on the subject of medication, at least, can be very dangerous and can add considerably to the confusion regarding facts (as dangerous as your child’s friends’ “anecdotes” on the merits of smoking marijuana, for example). If you dispute the merits of the last comparison, please bear in mind that although the “ADHD” drugs are legal, you are not licensed to give advice on them, just like your child’s friends.
Next, “ADHD” has NEVER been proven scientifically to be anything other than inattentiveness and misbehaviour. If I’m wrong, I’m sure many posters will point me to the proven scientific facts that state otherwise. Fidgetting is not a brain disorder. Neither is daydreaming. Neither is shouting out answers prematurely. Neither is any one of the classic ‘ADHD” symptoms taken on its own. When a child, for whatever reason, decides to exhibit these normal childhood behaviours to a degree where they interfere with others, the people who are affected by these behaviours have labelled them a disorder. If that’s so, then where is the “letting your phone ring in the theatre” disorder? Or, where is the “being a soccer hooligan” disorder.
Wheezing IS a disorder. We don’t all wheeze a little or grow out of wheezing. Wheezing is abnormal in humans and thus, must be treated. Asthma may kill. “ADHD” will never kill. “ADHD” medication may kill and has killed. You can’t reasonably compare asthma to “ADHD”.
I assert that “ADHD” as an illness necesitating, or benefitting longterm from, medication does NOT exist. Please search for proof that it does (and please help me out of my ignorance when you find it).
JenM, I really don’t want to get into your personal problems (although you were the one who brought them to this board), but I really think you should closely examine a situation where a young child told you of a condition of not being able to pay attention when neither you nor her teacher (nor any other concerned adult, I suppose) noticed it. It really does smack of invention for attention that both you and the teacher have found convenient to buy into. Of course, there will be no shortage of “symptoms” to discover (now you know about it), since the symptoms are normal childhood behaviour and your daughter is a child.
Yesterday, I thought of a new way to state the “ADHD” condition:
Attention Deficit with accompanying Hyperactivity
That is: The child suffers from a deficit of attention from its significant adult relatives and expresses its disapproval through hyperactive childishness.
The attention deficit is supplied by the child’s parents, not the child. Perhaps, it’s also a learned response. “They don’t attend, why should I?”
JenM,
I’ll be waiting patiently for the proof that “ADHD”, as an illness, disease or brain disorder, exists. Meanwhile, please don’t ask me not to use your comments here to illustrate my points. if you post it and it serves my point in response, I’ll continue to quote it.
anecdotes and message boards
The length of your post suggests the strength of your feelings on the subject. In answer to what might be one of your points in the question you pose. I’d say there is no such thing as ‘anecdotal evidence’ but others might disagree. I’d say anecdotes illustrate points - they can never prove them.
Anecdotes in regard to most anything offer one person’s experience from which others may add to their thought process or not as they choose. I’m not familiar with the board to which you refer but it sounds as if those parents have made their decision and are pursuing their course of action and as a consequence that board is not interested in devoting space to discussion of decisions already made.
The Internet is public space but not open space it seems as message boards are controlled by their hosts. But the Internet is a wide space to be sure and there are always other message boards if one keeps looking.
Good luck.
Re: Anecdotal "evidence", does it hurt or help?
Some anecdoctal evidence is 100% accurate and on target; other anecdoctal evidence may be partially false/partially true; and still other anecdoctal evidence may be 100% inaccurate/incorrect and completely off target.
The best place to begin to discuss ADHD is with the family physician (a medical doctor).
Anecdotal evidence
Anecdotal evidence is simply that - anecdotal. Different people have different experiences. Science can’t be based on anecdotes, because science seeks observational consensus. But not everyone is a scientist. All of us tend to seek evidence to support our beliefs, and knowing that someone else has had success with a certain approach can be reassuring, even if it isn’t scientific. I have shared a lot of non-scientific anecdotes that I hope inspire people to try out some of the things I have done that have worked for me.
The reason that these discussions don’t go anywhere (IMHO) is because we are dealing with a difference in values. Some people believe that doctors are generally well informed scientists who would never recommend anything unsafe. I am not one of those people, and I would never start my research with my physician. I would make sure I knew a lot about a particular condition BEFORE I talked to my physician, because I believe that many physicians are misinformed and extremely arrogant about the rightness of their position. I could argue all day with folks who believe that doctors are well informed scientists and we would most likely get nowhere. This is because both I and the person I am talking to are operating on our personal beliefs about doctors. There are no scientific studies to support either view, and even if there were, we would probably continue to operate on our own belief systems.
Science tries to cut through all of the values-based thinking and get at some agreement on the “truth”. But even if we have the truth, our decisions about which truth is most important is still affected by our values, by what we think is important. I value independence and individual responsibility for my health, so I tend to make my own decisions and to be skeptical of doctors. Others value expert opinion and experience and want to know that they are relying on what is considered to be the professional standard of practice. Who is right? Maybe both are. It depends on what you want.
As far as ADHD is concerned, I think we could all start off by acknowledging that it is a controversial area where the science is not going to answer all the questions, because the science doesn’t provide clear answers. We will all have our opinions, and we will disagree. If we can figure out a way to present our information for others to use as they wish, without attacking each other, this might become a useful forum. If we don’t, it becomes an unsafe place where people constantly snipe back and forth in a personalized way, and people become more entrenched in their positions. I would prefer to spend a lot less time on “is ADHD a disease” and a lot more time on “how do I deal with the difficulties of raising an active/creative/oppositional/impulsive child. Maybe the idea of a “medication: pro and con” board should be considered, so that those who want to argue these issues can happily do so there, and this board can focus more on parenting issues.
I am happy to share my views with anyone, but I respect the right of other to disagree with me. I really don’t think we are going to come to consensus about this issue. The scientific community can’t after 40 years of research, why should we expect to agree with each other?
Brian, are we discussing what you posted about or continuing another discussion? To get into disputing my other post under a question about anectdotes is not fair. I will say research your asthma as you think you have your ad/hd. Unless I am misunderstanding you (which is possible) you are saying you don’t think ad/hd exists except to those in authority or positions of power. That it more damaging than any anectdote offered here. If you felt that way why would you even be here? Why am I wasting MY time? Do you think you are helping people looking for help by telling them it doesn’t exist? And you are worried about anectdotes? If you think that a child who has ad/hd can’t complain or tell you the symptoms then please come talk to my child and others. Who do you think told me that she had a problem paying attention? Her teacher never once mentioned that or her behavior. Nor did I. In fact, I’ve said since day one behavior is not an issue here. If you think all children have “normal” symptoms with ad/hd than you are missing the mark in your research. Right on this website there is information telling you about how it affects things such as working memory. Actually, I’m sure you know there are books on it. Or, is that also inaccurate? When you research asthma you will find that there is also no test for that but we know it exists because of its symptoms. There is no blood test or anything like that. It can also be a trial of trying to find the right meds. Or, would you say when my child cannot breathe or her chest is tight that it is me who has the problem with that wheezing sound so that is why I am medicating her?
Please in the future leave me and my statements out of your topics for discussion. It wasn’t necessary to your question. As far as your actual question listed in the topic. My opinion was already stated as you so nicely did that for me. Thank you.