What is ADHD? The Real Story Behind the Disease

1. Outline
2. Introduction
3. Symptoms
4. What I Think About The Diagnosis
5. My Own Battles
6. What ADHD Is Not
7. Treatment And Medications For ADHD
8. What You Can Do

INTRODUCTION

So many people write so many different things about ADHD that it is often hard to know where to begin. Some write from the viewpoint of a parent, some from the eyes of the sufferer, others who have friends or siblings with the disease
There are also hundreds, probably thousands, of articles on the medical aspect of ADHD. Most of what you will find is in the form of the "terrors" of living with ADHD, or with someone who has it, or coping with ADHD.

My husband and stepson both have been diagnosed with ADHD. I can sit here and try to tell you how hard it is to deal with this, or I can tell you what I have learned, things which no doctor, and few others will say.

I have been studying ADHD in a sort of "fly by night" fashion, since I was fairly young, only in my midteens. I studied it from the aspect of someone who was pretty much outside of the problem. I wanted to find out whether or not my younger brother suffered from the disease, and if so, how to help him. At the time, I learned little, I was fairly new to researching anything, let alone something for which (at the time) there was little information to be found. However, my studies became much more ardent when my husband gained custody of my stepson. It was, in fact, while he was battling in the court system, that I really started to study the subject. We knew already that my stepson had the disease, but we had no clue what that meant. I wanted to learn everything I could, from symptoms to treatments, from how the problems can be dealt with by the person to how the family and friends can help him cope. I thought I was well armed to go into battle with this ghostly disease. But none of it prepared me for the reality.

SYMPTOMS

At one time I had a list of about forty symptoms of ADHD. I read this list and kept it handy so that I could work on a sort of system for my stepson to combat them. In our recent move the list has been lost. The CDC has a list as well although it is much shorter. It is actually three lists with a total of eighteen symptoms, as well as a set of guidelines, for the diagnosis of ADHD.

There are three types of ADHD. The first is ADHD combined type, which fulfills the criterion of both Type A and Type B. Type A is "predominantly inattentive", and requires that at least six of the symptoms from List 1 be present for at least six months prior to the diagnosis. Type B is "predominantly hyperactive" and requires that at least six of the symptoms from Lists 2 and 3 be present for at least six months prior to diagnosis.

List 1: Inattentive
1. Often does not give close attention to details or makes careless mistakes in schoolwork, work, or other activities
2. Often has trouble keeping attention on tasks or play activities
3. Often does not seem to listen when spoken to directly
4. Often does not follow instructions and fails to finish schoolwork, chores, or duties in the workplace (not due to
oppositional behavior or failure to understand instructions)
5. Often has trouble organizing activities
6. Often avoids, dislikes, or does not want to do things that take a lot of mental effort for a long period of time (such as
school work or homework)
7. Often loses things needed for tasks and activities (e.g. toys, school assignments, pencils, books, or tools)
8. Is often easily distracted
9. Is often forgetful in daily activities

List 2: Hyperactive
1. Often fidgets with hands or feet or squirms in seat
2. Often gets up from seat when remaining in seat is expected
3. Often runs about or climbs when and where it is not appropriate (adults and adolescents may feel restless)
4. Often has trouble playing or enjoying leisure activities quietly
5. Is often "on the go" or often acts as if "driven by a motor"
6. Often talks excessively

List 3: Impulse Control
1. Often blurts out the answers before questions have been finished
2. Often has trouble waiting one's turn
3. Often interrupts or intrudes on others (e.g. butts into conversations or games)

There are also three other requirements for a person to be diagnosed with ADHD of any kind. First, at least some of the symptoms must have been present before seven years of age. Second, some impairment from the symptoms must be present in at least two or more settings, such as home and school. Third, the symptoms must be present outside of other mental disorders and not accountable for by them (such as PDD, schizophrenia, and other psychotic, and any mood, anxiety, dissociative, or personality disorder).

Pretty strong requirements, one would think, right? Look more closely at them though. I do not think I have ever seen any child who, by the symptoms, does not fit into one of the three types of ADHD, and I have honestly seen few adults who would not. Most children under the age of seven display more than enough of the symptoms to likely be diagnosed with combined type. Most of these symptoms are usually displayed in more than one setting (in fact in just about every setting). Last, I have seen and heard of very few cases of a child that young being diagnosed with even one of the disorders mentioned above.

Before we go any further, I would like to issue a challenge to all of you who are reading this. print out several copies of the three lists above as well as the additional criterion. Interview anyone you can think of who has children. Ask them which of these behaviors their child displays, if any. Then ask if the child has displayed these behaviors for more than six months. Ask whether the child is over seven (not the exact age), and if so, has he shown even a few of the behaviors before he was seven. Then ask if the behaviors cause problems, and in what settigns they cause problems. Last, tell the parent the list of mental disorders above, and ask if their child suffers from any of them. Write this information down on a separate sheet of paper for each child. The names of the children are not needed, nor are their exact ages. Try to include as many different types of family as you can, for instance, low to high income, strict versus lenient parenting, different races, different religions, etc. This is to get a good mix. I am going to be conducting an online version of this survey as well. If you would like to have a copy of the form I will be using, or if you would like send me your results, please feel free to email me at wisdomsbane@yahoo.com. I will be posting the results on a website which I am in the process of designing at the moment. If you would like to be notified when the website is up, email me at the same address. I will be trying for a study group of at least 2000 children, preferrably 5000, including those who have emailed me with their own results. Bear in mind that if I feel your results are faked, I will not include them in the survey.

WHAT I THINK ABOUT THE DIAGNOSIS

You may be thinking by now that I think this whole thing is, basically, some sort of hoax to turn the children into little zombies. I have heard that opinion and others, and do not agree. I do believe that ADHD exists, however, there are simply too many children who display exactly the same behaviors and fit the criterion for diagnosis for them to be anywhere near accurate. The list of symptoms given is, mostly, a guideline for parents and teachers to assess the possibility of the disease existing in a child. The problem lies in the fact that most children, according to these guidelines, should be taken to a doctor and tested for the disease, and that most of them would likely be diagnosed with it. Above and beyond the word of teachers, parents, and others involved in a child's life, the doctors really have no way of determining what is really going on.

I feel that in children such as my oldest (my stepson), the diagnosis is accurate. But, I also feel that other children are being misdiagnosed. Something more needs to be looked at before a diagnosis of ADHD can be accurate. When looked at closely, there is a common denominator between most of the behaviors associated with ADHD, that is impulse control. In most of the symptoms, the inhibitions are either nonexistent or very slight. Humans are born without inhibitions (note a child's fearlessness of heights, until he finds out that falling can hurt). It is only through what we learn that such inhibitions are developed. We learn as we get older how to control ourselves, how to do things in a way that will allow us to function within and as a part of society, rather than bumping around as solitary beings getting in each others way. Such things take time, and a child who, by age three or four, has barely learned how to control himself well enough to walk, talk, potty, and feed himself, how fair is it to expect that child, by age seven, to have learned such abstracts as self-discipline, respect, and the like. Especially in a time when it takes two incomes to support a family of four (two adults and two children), let alone any family larger than that.

To put it simply, the diagnosis of ADHD needs to be handled with far more care. ADHD should never be diagnosed before age ten. Other factors should be considered, such as the amount of time the child is separate from his parents, any trauma's in a child's life that may cause him to "act out", and any factors that may be the same or similar in the situations where the child's behaviors are taking place. There is far too much we do not know about the human brain, let alone that of a young child, who may not be able to communicate what he is thinking and/or feeling, or who may feel that it is wrong for him to do so, to take such a diagnosis so lightly.

MY OWN BATTLES

I have been battling over ADHD for about three years. Not only have I been trying to help my stepson by the normal means (making sure he gets his medications, and following advice on how to limit distractions, etc.), but I have also been battling the "professionals" (schools, counselors, doctors, etc.). These battles have taken place over several things. The schools lack of ability or willingness to actually teach my stepson (my husband and I are considering homeschooling, in fact, for this very reason). The prescription of medications that have made his behavior worsen, then when we mention something, an increase in dosage, each time (he was eventually put on the highest dose of Concerta, which the hospital promply lowered, along with taking him completely off Clonidine, when we had to admit him because he was becoming completely out of control). The counselor's inability to draw him out (admittedly, she did try and she was helpful in our fight to take him off of the Concerta and in other areas, looking back, I think a male counselor would have probably been the best for him). The school even went so far as to try to have him classified as a retard, until we took him to a specialist (with a recommendation from his counselor), who tested him and found the same thing I had been trying to tell them for two years, that he needed more of a challenge.

I also had to fight laws which make me incapable of handling anything to do with my stepson, as I am not his "legal guardian". My husband and I had to fight to obtain forms that he could fill out and sign, giving me permission, not lonly to be told about anything to do with Michael, but to be able to make decisions regarding his health and well-being, including anything to do with the school, mental health, etc. Even after these papers had been signed, I still had to instill in some of these people the idea that I, not my husband, was the one they needed to speak to, as I, not my husband was the one who dealt with the majority of things to do with all aspects of all of my children's lives. They insisted that my husband (who worked, sometimes sixty or more hours a week, usually during the business hours many of these places held) should be the one to attend all of the meetings. Can you imagine, constantly trying to explain to the same handful of people that by the time our children woke in the morning my husband had already traveled the hour plus to work and been there for at least two hours, and that by the time he came home in the evenings, all he and the kids wanted to do was have a little time to play and have fun, because all of them (including my husband) had only, at best, an hour or two before bedtime, if he was even able to make it home before they went to bed.

Imagine, if you will, trying to go over this same monologue with the same people over and over again, until you are blue in the face. I was the one to fix the children's meals. I was the one to get the children up and ready for the day, and off to school. I made sure they had their baths. I was the one home when they got out of school and able to help with homework. I was the one who was home during the day to field calls about everything, including calls from teachers over sickness and behavior. I was the one making and keeping appointments with doctors, counselors, and teachers. I was, to put it simply, their main caregiver. I still am, even though I work part time now.

Mind you, my husband does his part, but he simply has not had the experience in dealing with children in general, nor the time with the children that I have had. It has not been expected of him to have to know these things about the children, because as a stay at home parent, that was my responsibility, so that he could concentrate more on things such as the bills, putting food on the table, making sure myself and the children were clothed, etc. I know, at all times, what needs to be done, when, and how. This is not to say that my husband walks around in a haze, thinking that there is never anything wrong. He and I talk when anything comes up, I keep him abreast of what is going on in the children's lives when he is not there to see for himself, and we talk together on how to make ends meet, and provide our children with the best life we can give them. But with the kinds of schedules he has had in the past, there was really very little he could do about any of it.

It is hard enough to take care of one child let alone four, and when you have a child with any disease, mental or otherwise, it makes things much more difficult. I, at least, had the advantage of helping to raise my brothers (one of whom suffers from something which shares many of the symptoms of ADHD), and of babysitting other people's children. My poor husband has not had that. Think on that, never before we had children, had he been sole provider for anyone but himself, nor had he to worry about the care and upkeep of any child, let alone one with a disease like ADHD. But, as a male, in our society, he was not given that chance, and if for no other reason, this is what makes it so hard for my husband to handle these things where our own children are concerned.

Then again, my husband has another problem being able to handle my stepson's ADHD, and all that comes along with it. He has been diagnosed with it as well. It is the blind leading the blind in this case. One who cannot control his own impulses, would have a very difficult time controlling another's, or helping the other to control his own. My husband battled the disease on his own for a long time, he was never diagnosed until my stepson's counselor recommended that he be checked, because of some of the things she had heard him say. It was only just over two years ago, in fact, that my husband was diagnosed. Imagine, thrity years old and being diagnosed with a disease like ADHD. Especially after having graduated high school, putting yourself through college, and holding several management and supervisor positions, most before he had even met me six years ago. Long before he knew he had the disease, let alone started recieving treatment for it. i have helped him as well as I could, acting as his "counselor", helping to keep him on schedule by reminding him of appointments he needed to keep, and helping him with paperwork when the words would seem to dance across the page because hsi focus was just not there at times (this does not occur often, but when it does, you can imagine how frustrating this must be for him).

WHAT ADHD IS NOT

ADHD is not just some joke, it is a real problem. There are too many people who sit there and make fun of ADHD (and other mental diseases), and those who suffer from it. These people never stop to think about the fact that this isn't just something the person does just because he wants to get out of doing things, or just to look and act silly. ADHD is a disease, it is not something you can control (at least not to the extent some seem to expect), let alone to stop when you want to. There is no on/off switch for it. Just as with cancer and heart disease, ADHD affects many aspects of a person's life. It may not be deadly, like the two examples I gave, but also unlike them, there is no possibility for a cure, or a remission. When one has ADHD, it is for life, and the symptoms still show, even if they are not always severe. ADHD can be treated, but it is an ongoing struggle as medications lose their effectiveness, or are found to have severe side effects for the person. It is something that is nearly impossible to control without some sort of medication, and good counseling or a very good support base (the latter of which is very hard to find, because of how often the disease is treated as either a joke, or as simply being nonexistent).

ADHD, along with similar diseases, is also not mental retardation. It affects the person's ability to concentrate, which in turn can impede the person's ability to learn by normal means. However, a diagnosis of ADHD does not go hand in hand with a diagnosis of retardation. In fact, both my husband and stepson are proof that that is not so. Those with ADHD actually, as far as I have seen, tend to be quite intelligent, their minds having the restlessness, and speed of their bodies. This makes it hard for them not to form ideas, but to easily express them, it also makes it hard for them to stick to one subject for long. Often what is seen as retardation is this lack of ability to communicate the ideas they do have, along with a simple need for more of a challenge, as well as a lack of self-esteem caused by how others view them and their disease. They are made to feel, as others feel, that they should be able to control themselves absolutely, and when they cannot, they become frustrated with themselves.

TREATMENT AND MEDICATIONS FOR ADHD

ADHD, as I have already mentioned, while incurable, is treatable. Counseling can often assist in the emotional problems not only inherent to the disease, but also those caused by it. There are also medications that can help to temper the problems with control and concentration. Tutoring can help with the learning problems, as can methods of individualized learning programs. However, the best treatment is to allow the person the ability to move, and be active, in order to release the pent up energy he has. Especially with a child this is important. Allow the child to to have stretch breaks, and to move around if he needs to (even pacing in a little area of the room). Do not require that everything be done all at once, or that the child must do one specific thing in a short period of time, instead give him several tasks, and allow him to choose the order he does them in, even if that means he skips around from task to task (I have found this to be especially helpful with both my husband and stepson). Treating ADHD can be very difficult, but obly if you make it into something much harder than it has to be. It is not impossible to overcome the problems of ADHD, really it just takes a bit of relaxation on your part.

When using medications to treat ADHD, you should tread cautiously. If a doctor wishes to prescribe a medication for your child, make sure you research it first, especially when there are two or more medications prescribed at once. Ask you child's doctor about any possible side effects, even rare ones. Also, make sure to ask about any possible interactions, and if your child is experiencing puberty, make sure that your doctor explains the effects hormones can have not only on the disease itself, but the medications your child may be taking. Also, monitor your child's adjustment to the medications prescribed, there should be a week or two where the child may actually show worsening behavior but any longer than that and there could possibly be a bad reaction to the medication, watch for anything the doctor tells you to keep an eye on, or anything that the little sheet most pharmacies give with medications says to look out for. Especially if you notice a severe change in behavior (for the worse), you should contact your doctor. Be sure not to just accept that the doctors know what they are doing. Without your input they cannot effectively treat your child. Unless you tell them your concerns (and they listen), they cannot know what is going on with your child. If you have concerns about the diagnosis, treatment, or anything else, and your doctor seems to be ignoring them, then your best bet would be to seek out another doctor.

Also, as soon as you have the primary diagnosis (this is before the battery of tests), make sure you get all the information you can. Your doctor should be willing and able to cooperate with you in this, but you should really try other resources as well. Obtain any information you can on treatments, helping to alleviate the symptoms, what ways to best allow your child to learn, etc. And remember that you do have a say in what goes on with your child. As my husband and I were advised, do what you think is right for your child, you know best what is going on. Even if this means finding a second opinion on either the diagnosis or the treatment.

WHAT YOU CAN DO

You are the only one who can say what is right for your child. As with any other disease, your first step is to be informed. Make sure the diagnosis is correct. Make sure you know what type of ADHD your child has, as well as how severe it is. Make sure you learn as much as you can about any medications proposed, and any other forms the treatment can take, as well as alternatives to those treatments. Make sure you that any information that you can use is given to you, or that you find it yourself (personally, i think the latter is best, that way you can gain less biased materials).

Do not allow yourself to be bullied into thinking that just because you are not a professional you do not have any say in what happens. Also do not allow anyone to tell you that you do not know what is best for your child's health and safety. Anyone who tells you that you do not know what is going on in your own child's life should be removed from his life as soon as possible (preferrably by replacing the person with someone who will listen to your concerns and ideas, and talk with you about them). The article I wrote titled "Stay-At-Home Parents Vs. Schools and Others" was written as a result of the many fights I described to you in this article. In fact, anyone reading this article should read that one, as it explains exactly why the professionals do not know quite as much as they, all too often, think they do.

Keep in mind that you are your child's voice. You are the one who needs to listen to him, even to the unspoken things. You are the one who needs to make sure that the doctors and others involved in your child's life, not only understand what is going on in your child's life, but also that they know that you, not they, know the most about what is best for your individual child.