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What Is Attention Deficit Disorder?
Once you catch on to what this syndrome is all about, you'll see it everywhere. People you used to think of as disorganized or manic or hyper or creative but unpredictable, people who you know could do more if they could just "get it together," people who have bounced around in school or in their professional lives, people who have made it to the top but who still feel driven or disorganized, these may be people who in fact have attention deficit disorder. You may even recognize some of the symptoms in your own behavior. Many of the symptoms of ADD are so common to us all that for the term ADD to have specific meaning, rather than just be a scientific-sounding label for the complex lives we lead, we need to define the syndrome carefully. The best way to understand what ADD is and what it is not is to see how it affects the lives of people who have it.
In the cases that follow, and in the many case illustrations that appear in this book, one can wimess the struggles individuals faced to break through inaccurate labels and unfair judgments. As their stories unfold, a definition of ADD emerges.
Case 1: Jim
It was eleven o'clock at night and Jim Finnegan was up pacing in his study. This was where he often found himself at night: alone, pacing, trying to get things together. Now approaching the halfway point of life, Jim was getting desperate. He looked around the room and took in the disorder. The room looked as if the contents of a bag lady's shopping cart had been dumped into it. Books, papers, odd socks, old letters, a few half-smoked packages of Marlboros, and other loose ends lay scattered about, much like the bits and pieces of cognition that were strewn about in his mind.
Jim looked up at the to do list that was tacked to the corkboard above his desk. There were seventeen items, the final one circled several times in black ink and marked with exclamation points: "Reorganization proposal due Tues., 3/19!!!" This was Mon., 3/18. Jim hadn't started on the proposal. He'd been thinking about it for weeks, ever since he told his boss that he had a plan that would increase productivity, as well as morale, in the office. His boss had said fine, come up with a written proposal and we'll see how it looks. His boss had also added a remark about how he hoped Jim would have enough "follow-through" to actually get something done this time.
Jim knew what he wanted to say. He'd known for months what he wanted to say. The office needed a new computer system, and the men and women out front needed more authority so they could make decisions on the spot so everybody's time wouldn't be wasted in unnecessary meetings. Efficiency would go up and morale would definitely improve. It was simple. Obvious. All the ideas were detailed on the various scraps of paper that dotted the floor of his room.
But all Jim could do was pace. Where do I start? he thought to himself. If it doesn't come out right, I'll look stupid, probably get fired. So what else is new? Why should this job be any different? Great ideas, no follow through. That's me, good old Jim. He kicked the trash basket and added to the mess on the floor. OK, breathe in, breathe out, he told himself.
He sat down at his word processor and stared at the screen. Then he went over to his desk and began to straighten things up. The telephone rang and he barked at it, "Can't you see I'm busy?" When the answering machine came on, he heard Pauline's voice: "Jim, I'm going to sleep now. I just wanted to see how your proposal is coming. Good luck with it tomorrow." He didn't have the heart to pick up the phone.
The night went on agonizingly. One minor distraction after another would knock Jim off-line as he tried to clutch onto the task at hand. A cat would meow outside. He'd think of something someone had said three days ago and wonder what they really meant by that. He'd want a new pencil because the one he had felt heavy in his hand. Finally, he got down the words "A Proposal for Office Reorganization at Unger Laboratories." Then nothing. "Just say what you want to say," a friend had told him. OK, say what you want to say. But nothing came. He thought of a new job he wanted to apply for. Maybe I should just bag this and go to bed. Can't do that. No matter how bad it is, I've got to finish this proposal.
By 4 A.M. he was beat. But not beaten. The words began to come. Somehow his extreme fatigue had lifted the censor in his mind and he found himself explaining his ideas simply and efficiently. By six he was in bed, hoping to get a little sleep before his meeting with his boss at nine.
The only trouble was that at nine he was still in bed, having forgotten to set the alarm before he went to sleep. When he arrived in a panic at the office at noon, he knew from the look on his boss's face that no matter how good the proposal was, his days at Unger were over. "Why don't you find a place with a little bit more flexibility?" his boss said, and thanked him for his proposal. "You're an idea man, Jim. Find a place that can accommodate to your style."
"I don't get it," he said to Pauline over drinks several weeks later. "I know I have more to offer than getting myself fired every six months. But it's always the same old story. Great ideas, but can't get it done. Even in high school, can you believe that? The guidance counselor, she was this really nice lady, she told me that I had the highest IQ in the class, and so she just couldn't figure out why I had such a hard time living up to my potential."
"You know what's not fair?" Pauline said, turning the stem of her Manhattan glass between her thumb and forefinger. "They took the ideas in your proposal and used them. Dramatic improvement. Everybody's happier and work is up. Those were your ideas, Jim, and you got fired. It's not fair."
"I don't know what's wrong with me," Jim said. "I don't know what to do."
Jim had attention deficit disorder. When he came to see me at the age of thirty-two, he had been living a life of chronic underachievement, falling short of his goals both at work and in relationships because of an underlying neurological problem that made it difficult for him to pay attention, sustain effort, and complete tasks.
ADD is a neurological syndrome whose classic defining triad of symptoms include impulsivity, distractibility, and hyperactivity or excess energy. About 15 million Americans have it today; most of them do not know that they have it. The condition occurs in children and adults, men and women, boys and gifts, and it cuts across all ethnic groups, socioeconomic strata, levels of education, and degrees of intelligence. It used to be thought that this was a disorder of childhood alone, and that one outgrew it during adolescence. We now know that only about a third of the ADD population outgrows it; two-thirds have it throughout adulthood. ADD is not a learning disability or a language disability or dyslexia, and it is not associated with low intelligence. In fact, many people who have ADD are very smart. It's just that their smartness gets tangled up inside. Undoing the tangle to get a smooth run on the line can take more patience and perseverance than they can consistently bring to bear.
Where does the syndrome begin and normal behavior leave off? What is impulsivity? What is distractibility? How much energy is excess? These are the questions we will explore throughout this book, mainly in the context of individual cases, like Jim's. Considering the symptoms, can't we all recoguize parts of ourselves? Yes. However, one bases the diagnosis of ADD not on the mere presence of these symptoms, but on their severity and duration, and the extent to which they interfere with everyday life.
When Jim came for consultation, he was at wit's end. He came into my office, sat down in one of the easy chairs, and began to run his fingers through his curly hair. He leaned forward, alternately looking at me or staring at the floor. "I don't know where to begin. I don't even know what I'm doing here," he said, shaking his head as if to say no, this won't help either.
"Did you have any trouble finding your way here?" I asked. He was twenty minutes late, so I figured he might have gotten lost.
"Yes, yes, I did," he said. "Your directions were fine, it wasn't your fault. I just turned left where I should have turned right and then I was gonzo, school was out. It's a miracle I got here at all. I ended up at some gas station in Somerville."
"Well, it can be pretty confusing," I said, hoping to let him relax a bit. Of the people who consult with me for problems related to ADD, probably about a half are either late for their first appointment or miss it altogether. I have come to expect it. It comes with the territory. My patients, however, usually feel very bad about it and so begin the session thinking that I am going to reprimand them in some way. "You certainly aren't the first person to get lost coming here," I said.
"Really?" he asked. "That's good to hear." He took a deep breath to say something, but paused, as if the words had crowded in his throat, then let his breath out in a long sigh, the words apparently dispersed. He went through the same cycle a second time before I asked him if maybe he could use a few moments just to collect his thoughts while I wrote down some bits of information about him like his name, address, and telephone number. That seemed to help. "OK," Jim said. "Let's start."
"OK," I responded, leaning back in my chair, folding my hands behind my head. There was another long pause, and another sigh from Jim. "I can see that it's hard for you to get started," I said. "Maybe we could focus on what the problem is that brought you here."
"Yes," he said, "OK." With that little bit of prodding from me, Jim began to fill in most of his history. A normal childhood, or so it seemed to him. But when I pressed for more detail, Jim acknowledged that he was quite rambunctious in grade school and enjoyed getting into mischief. He got good grades even though he never really studied. "I thought school was like playtime," he said. But with high school, things got tougher. His innate intelligence couldn't carry him so easily anymore, and he began to fall behind. He started to get lectures from his teachers and parents on his moral shortcomings, how he was letting himself and everyone else down, how in the long he'd be the worse for it, and so forth. His self-esteem fell, although somehow his inborn temperament was buoyant enough to keep him fairly upbeat. After stumbling through college, he began a long series of jobs in various computer-related fields.
"You like computers?" I asked.
"I could have invented them," he said with great enthusiasm. "I love them. I just have this understanding of them, you know what I mean? I know what makes them tick, and I know how to get the most out of them. If only I could tell people what I know. If only I didn't screw up every time I get a chance "
"How do you screw up?" I asked.
"How do I screw up?" he asked, then repeated the question again, turning it into a sorrowful statement by his tone of voice. "How do I screw up. I forget. I argue. I postpone. I procrastinate. I get lost. I get mad. I don't follow through. You name it, I do it. I'll get into these discussions with my boss, and I'll see my way is right, and the next thing you know, I'm calling him a stupid jerk for not seeing that I'm right. Tends to get you fired, calling your boss a stupid jerk. Or I'll have this idea, but I won't be able to find it, like it's a jumble lost in the closet or something. It's in there, I know it's in there, but I just can't get it out. I want to get it out, I try to get it out, but I can't. One of my old girlfriends told me before she left me that I should face it, I'm just a loser. Maybe she's right, I don't know."
"You cared about her?" I asked.
"For a while. But then she got fed up, like all the rest have. I mean, I'm pretty intense to be with."
"Where do you think that intensity comes from?" I asked.
"I don't know," he said. "It's always been there, though."
The longer we talked, the dearer it became how right Jim was, how the intensity had always been there, seldom harnessed, but always burning. That intensity may in part explain why ADD is common among people in high-energy fields, from sales to advertising to commodities to any high-pressure, high-stimulus kind of work. "Have you ever consulted a psychiatrist before?" I asked.
"A couple of times," Jim said. "They were nice guys, but nothing really changed. One of them told me not to drink so much."
"How much do you drink?"
"I binge. When I really want to let loose, I go out and tie one on. It's an old family tradition. My dad drank a lot. I guess you could say he was an alcoholic. I don't think I'm an alcoholic, but that's what they all say, huh? Anyway, I get these terrible hangovers the next day, so I don't go back to it for a while."
Often people with ADD self-medicate with alcohol or marijuana or cocaine. Cocaine, particularly, is similar to one of the medications used in the pharmacological treatment of ADD.
Jim began to cross and uncross his legs a lot as we talked. "If you're feeling restless, feel free to pace a bit while we talk," I said.
"Really? You don't mind? Thanks a lot." He stood up and began to walk around, conducting his conversation with his arms as he spoke. "This is great. Most people would get unnerved if I did this, but I really think better when I walk. Is that weird? No wonder I had trouble in school. You know, that's half my problem. I'm always so tied up inside. And you can imagine it doesn't go over big at work if I want to pace half the time."
"I don't know," I said. "Maybe you just haven't found the right job."
"You sound like all my bosses. Is there a right job for me?"
ADD comes in many shapes and sizes. In many people, particularly adults, the symptoms of ADD are masked by more obvious problems, such as depression or gambling or drinking, and the underlying ADD is never detected. In other people the symptoms take on a particular cast, congruent with the person's personality as it evolves over time, so that the symptoms are never really noticed the way symptoms of a cold or flu might be but rather are dismissed as being part of "just the way he is," not warranting medical or psychiatric intervention. And within the domain of properly diagnosed ADD there is also much variability. Jim's ADD, I was discovering, was the high-energy, hyperactive type. But there is another kind of ADD that shows no hyperactivity whatsoever. Indeed, these people can be underactive. This is the child, often a girl, who sits at the back of the classroom daydreaming, or the adult who moves serenely within a cloud, never quite present anywhere.
"I don't know if there is a right job for you," I said, coming back to Jim's question. "For now I'd just like to hear more of your story. Have you ever really told it before?"
"No. Nobody can follow me. I go off on too many tangents, they all say."
"Well, you just keep talking, and let me do the organizing. That's what I'm paid for."
Jim talked for a long while, over weeks. He told many stories of misunderstanding, miscommunication, self-reproach, underachievement, missed chances, angry people, and risky behavior. It often seemed, as his mother had told him when he was twelve, that he simply didn't know enough to come in out of the rain. He'd do foolish things, forget, and dillydally all the time. But he also told stories of adventure, and kindness, of intuition and charm and energy and enthusiasm. He told stories of big dreams and high hopes and big disappointments as well. Baffled and frustrated, he never blamed anyone but himself. He was a very likable guy, even though he didn't like himself very much.
And this is the case with so many people who have ADD. They are very likable, although they get into the most difficult of patches. They can be exasperating in the extreme one mother called me about her son, who had ADD and had just inadvertently almost set fire to his school, and asked me if she could run over him in her truck but they can also be unusually empathic, intuitive, and compassionate, as if in that tangled brain circuitry there is a special capacity to see into people and situations.
Jim's story took us through many twists and turns. There was the time he had a job as a bus driver: one dreamy afternoon doing his regular run he made what he thought was his last stop and headed home for the bus yard only to pull into the lot with a bus half-full of confused and angry customers. He had forgotten to make the actual final stop on the line. "Where are we?" the passengers demanded. "Where have you taken us?" It was Jim's last ride for that bus company. Or there was the time in conversation with a female colleague when he referred to his boss as a "pinhead," only to realize almost as he was saying it that the female colleague was his boss's wife. "I don't do it on purpose,". he said. "I just put my foot in my mouth. I don't think about who I'm talking to or where I am. Is it my unconscious wish to fail?"
"It could be," I said. "That sort of thing has been known to happen. On the other hand, it could be something completely different." I began to tell Jim about ADD. "You see, it might be that you're not a screw-up or a loser at all, and that you do not have an unconscious wish to sabotage yourself. It might be, and it is beginning to sound to me as if this is very much the case, that you have a neurological condition called attention deficit disorder. It's no more a thing to be ashamed of than being nearsighted is. In fact, it's sort of like being nearsighted. You don't focus very well. You have to strain to see clearly. People with ADD have trouble attending to one task at a time. You've probably heard of hyperactive children, and that was how this syndrome was originally described hyperactivity in kids. We now know that the symptoms include more than just hyperactivity and that it affects adults as well as children. The hallmark symptoms of ADD are easy distractibility, impulsivity, and sometimes, but not always, hyperactivity or excess energy. These people are on the go. Type A personalities. Thrill seekers. High-energy-, action-oriented-, bottom-line-, gotta-nm-type people. They have lots of projects going simultaneously. They're always scrambling. They procrastinate a lot and they have trouble finishing things. Their moods can be quite unstable, going from high to low in the bat of an eye for no apparent reason. They can be irritable, even rageful, especially when interrupted or when making transitions. Their memories are porous. They daydream a lot. They love high-stimulus situations. They love action and novelty. Just as this kind of problem can get in the way at work, it can also interfere with close relationships. Your girlfriend can get the wrong impression if you're constantly tuning out or going for fast action."
As I explained to Jim what attention deficit disorder was, I watched him. He leaned forward in his chair and looked right at me. He began to nod his head at the mention of each new symptom. An excited look came over the face that had been so harried when we first met. "When. I was a kid," he broke in, "it was always 'Earth to Jim!' or 'Where's Jim?' or 'Jim, why don't you just shape up?' My parents and my teachers just thought I was lazy. So I would get punished or yelled at. For a while I yelled back, but then I just sort of began to agree with them. I mean, what can you do? My dad had a way of smacking me across the side of my head if I talked back. It was kind of brutal, come to think of it. So I don't think of it much. I have to wonder, though, what kept me going. I mean, I never lost my spunk. I remember a teacher in the sixth grade making me copy pages out of a geography textbook because I had lost my homework. She said if I would admit I just hadn't done the homework instead of lying and saying I'd lost it, she wouldn't make me copy the pages. Well, I had done the damn homework, so I was not about to say I hadn't. Well, she got ticked off and really lost it. She got into this thing where she kept upping the ante, assuming I would back down. She kept adding on pages for me to copy. When she reached a hundred pages, she stopped. I stayed up all night copying those pages, and I would have reached the hundred pages if my mother hadn't found me in the middle of the night. She made me stop. Plus she went into school the next day and raised a big stink. Old Miss Willmott had to apologize to me. To me! It was the most satisfying moment of my entire educational career, bar none, and I'll always love my mother for it."
"But I wish they had known then what you are telling me now," Jim went on. "There were so many stories. My whole ninth-grade year was like one long war with my parents. They got into the same thing Miss Willmott did, always upping the ante. Their basic idea was that I wasn't trying hard enough, so they kept coming up with more and more punishments, none of which worked. It makes me kind of sick to think back on it. It wasn't my parents' fault. They didn't know what was going on. Why didn't anybody tell me about this before?" Jim finally asked me in exasperation.
"People haven't really known about it very much until fairly recently," I answered.
It can't be said when ADD came into existence. The fidgety, overactive child has been around, one may presume, for as long as children have been around. And they have not been treated well.
The treatment of children has been terrible throughout history, one of the consistent but little-mentioned black marks in almost every epoch of human civilization; people have seldom differentiated much when it comes to children who behaved "badly." Too often, it was simply recommended that these children be beaten, or in some cases, killed. There is something in the most inhumane part of human nature that enjoys hurting smaller and weaker beings, particularly if they annoy us or make demands on us. It is beyond the scope of this book to document the abuse of children that mars human history; I bring it up in connection with ADD because it has often been the overactive children, the ADD kids, who have been subjected to the worst abuse. It is only recently that we have conferred upon children rights beyond those of animals and decided to look upon their "misbehavior" as possibly signifying something other than satanic possession or a moral infirmity deserving punishment.
So it is not surprising that although the syndrome we now call ADD has been around for centuries, it was simply lumped together with all other "bad behaviors." It was not until this century that it began to be recognized as a medical condition. Although it is hard to say who first defined the syndrome, credit usually goes to British pediatrician George Frederic Still, who, in a series of lectures to the Royal College of Physicians in 1902, described some children in his medical practice who were difficult to control, showing signs of "lawlessness," lacking "inhibitory volition," and in general being obstreperous, dishonest, and willful. He hypothesized that the condition was not the result of bad parenting or moral turpitude, but rather was biologically inherited or due to injury at birth.
The theme of injury at birth and brain damage continued in the thirties and forties in the idea of the "brain-injured child." Even When no actual evidence of neurological impairment could be found, "brain damage" was invoked to explain uncontrollable behavior. It was during these decades that stimulant medication (amphetamine) was first tried, successfully, to help contain the behavior of some of these children.
Other terms began to appear, some quite descriptive, such as "organic drivenness," others rather amorphous and bleak, like "minimal brain dysfunction." One had to wonder whether the brain itself was minimal or the dysfunction was minimal or perhaps whether the understanding of what was happening in the first place was minimal.
Separating the symptom of hyperactivity from any notion of brain damage, Stella Chess in 1960 and others around the same time began to write about the "hyperactive child syndrome." Chess saw the symptoms as part of a "physiologic hyperactivity," whose causes were rooted in biology rather than the environment.
By the 1970s many major researchers were investigating the syndrome of hyperactivity. Virginia Douglas, in Canada, began to look broadly at the symptoms associated with hyperactivity and found four major traits to account for the clinical picture: (1) deficits in attention and effort, (2) impulsivity, (3) problems in regulating one's level of arousal, and (4) the need for immediate reinforcement. In large part due to her work, in 1980 the syndrome was renamed attention deficit disorder.
In the decade since that time, research has ballooned. Probably the most up-to-date and definitive account of the history and current state of the field is to be found in a book written by one of the great researchers in the area, Russell Barkley; his book is entitled, simply, Attention Deficit Hyperactivity Disorder.
"So what does it mean, exactly?" Jim asked me. "Does it mean I'm stupid?"
"Not at all. But don't let me tell you. You tell me. Are you stupid?" I asked.
"No, I'm not. I know I'm not," he said emphatically. "I've just had this trouble all my life of getting out what's inside."
"Exactly," I said. ''That can be due to a lot of different things in different people, but in your case I think it's due to ADD."
"Is it common?" he asked.
"Probably fifteen million people in this country have it, both children and adults. It affects males more than females, probably in a ratio of about three to one. We don't know what causes it exactly, but the best evidence is genetic. Other factors may contribute, like problems at birth, but genetics is the main cause. Environmental factors can make it a lot worse, but they don't cause it."
"You mean my mother didn't screw me up?" he asked ironically.
"Not in this case. Maybe in other ways, who knows. Do you want to blame her?"
"No, no. But I want to blame someone. Not blame someone, I just want to get mad. It really pisses me off that no one told me about this before. If this is just the way I'm wired "
"Then," I interrupted, "you don't have to blame yourself."
"Who is, of course, the person I've been blaming all along. But it is my fault, isn't it? I mean it doesn't matter whether I've got ADD or XYZ if I've messed up, I've messed up and at my age there's no one but me to take the heat. Right?"
"In a way, I guess," I said, rubbing my shoulder as if his words had activated an old ache. "But what's to gain in all the blame? I want to give you a framework to understand yourself in such a way you can forgive yourself and move on."
"OK," Jim said, "I get what you're saying. What's the bottom line, though? Is there anything you can do for this?"
"ADD people love bottom lines," I answered, laughing. "It's always, 'Get to the point'; 'What's the next show?'; 'Where's the beef?'"
"Yeah, you're right," he said. 'Tm not big on scenery. I want to get there. Is that bad?"
"I didn't mean to put you on the defensive. I have ADD myself. I know how it feels."
"You have ADD?" Jim asked, apparently taken aback. "You seem so calm."
"Practice," I said, smiling. "Actually, I'm sure for you there are times when you can be quite focused and relaxed. For me, doing this kind of work is one of those times. But the practice part is true also, and we'll get into that."
From this point Jim's treatment began. Actually, it had begun already. Just finding out about the syndrome, finding at last that there is a name for it, constitutes a large part of the treatment for most people.
"What is it with me?" he asked in one session. "I don't mean to be rude. But this guy calls me up and he starts to tell me the materials I sent him were the wrong ones, when I knew perfectly well they were the right ones, he just didn't know why they were the right ones, and so he thought they were the wrong ones, and so immediately that started to annoy me, but it wasn't even that that got to me, it was his tone of voice. Can you believe it? I knew from the first second he started on the phone that I wanted to hang up on him or punch him."
"You had like a rage reaction," I offered.
"Damn straight. And when I think about it now, I get mad all over again. So I tried to do what you said. Pause. Think of the consequences. This was a good customer. I didn't want to lose him and I didn't want him bad-mouthing me to his friends. So I paused. But the more I paused, the more he talked on, in this really slow, dumb voice, on and on, and! wahted to scream at him, 'Get to the point!' So instead, I just cleared my throat. But then he said to me, 'Don't interrupt me, I'm not finished.' Well, I lost it. I told him I thought we could be on the phone until next Christmas and he still wouldn't be finished and I had better things to do and I hung up. Can you believe that?"
I laughed. "I think you did very well. At least up until you lost it. The guy was pushing your buttons. And let's face it, there are going to be times where you're going to get annoyed and you're going to lose it. Treatment for ADD won't take that away completely, and you wouldn't want it to, would you?"
"I guess not. But is this part of ADD, this rage reaction, as you call it?"
"Yes," I said. "It's part of the impulsivity. If you think of ADD as a basic problem with inhibition, it helps explain how ADD people get angry quicker. They don't inhibit their impulses as well as other people. They lack the little pause between impulse and action that allows most people to be able to stop and think. Treatment helps with that but it doesn't cure it completely."
"You know what the funny thing was?" he asked. "The guy called me back the next day and said he was sorry we had developed a communication problem between us the day before and maybe we could start over. A communication problem, can you believe that? I said sure, only let me start this time. I explained to him in ten seconds why what I had sent him was what he needed, he said he understood and said thank you, I said, 'No, it is me who should thank you, I'm sorry for our communication problem yesterday,' and we said goodbye, best of friends." Jim slapped his knee.
"How do you like that?" I said. "Your guardian angel must have been on duty."
"But where does it come from, this anger?"
"Can you tell me?" I asked.
"I think it's built up over the years. When I was a little kid, I was all over the place, but I wasn't angry. I think it built up, in school. All the failures. All the frustration." Jim clenched his fists without knowing it as he talked about his feelings. "It got so I knew before I started something it wasn't going to work out. So all I had left was tenacity. I wouldn't give up. But, damn, why didn't I, with all the screw-ups I had to show for my efforts?"
Jim was beginning to get into what is a large and very important part of ADD, although, strictly speaking, it is not part of the neurological syndrome itself. He was starting to talk about the secondary psychological problems that typically develop in the wake of the primary neurological problem of ADD.
Due to repeated failures, misunderstandings, mislabelings, and all manner of other emotional mishaps, children with ADD usually develop problems with their self-image and self-esteem. Throughout childhood, at home and at school they are told they are defective. They are called dumb, stupid, lazy, stubborn, willful, or obnoxious. They hear terms like "spaceshot" or "daydreamer" or "out in left field" all the time. They are blamed for the chaos of family mealtimes or the disaster of family vacations. They are reprimanded for classroom disturbances of all sorts and they are easily scapegoated at school. They are the subject of numerous parent-teacher conferences. Time and again, an exasperated teacher meets a frustrated parent in a meeting that later explodes all over the child who isn't there. He feels the shock waves afterward. "Do you know what your teacher said? Do you know how embarrassed your mother and I were?" Or, from the teacher, "I understand you have no greater control of yourself at home than you do in school. We must work on this, mustn't we?"
Month after month, year after year, the tapes of negativity play over and over again until they become the voice the child knows best. "You're bad," they say in many different ways. "You're dumb. You just don't get it. You're so out of it. You really are pathetic." This voice pulls the child's self-esteem down and down, out of the reach of the helping hands that might be extended, into the private world of adolescent self-reproach. Liking yourself in adolescence is hard enough work for any child. But for the child with ADD it is especially difficult.
"You kept up your efforts, but it must have been tough," I said to Jim.
"It sure was," he responded with a kind of ruefulness in his voice that said to me, You don't know the half of it."
"Tell me about it," I said.
"It's just that I wouldn't know where to begin. By high school they almost had me convinced I was just plain stupid. I mean, I couldn't figure it out. I could understand the stuff in class. I could follow what was said. I could even jump ahead in my mind. But when it came to writing the papers or getting the assignments organized or taking tests, everything just went out the window. I would try. Believe me, I would try. I got lectures all the time on how I didn't try, but I did try. It's just that the bigger sledge hammer didn't work. I'd lock myself in my room and before you knew it I was gone. Doing something else. Reading. Listening to music. Then I'd catch myself and try and get to studying again, but goddamn it, it just didn't work." Jim's voice got harsh and his face turned red.
"It all comes back, huh," I said.
"It sure does. They'd tell me to try harder. Over and over again. Try harder. And I'd try harder and it wouldn't work. After a while! figured I didn't have the brain to do it. And at the same time I knew I did. But it just didn't work out."
"So you were frustrated all the time. No wonder you felt angry."
"Do you think that's why I started drinking? I felt better after I had a few pops. But doesn't everybody?"
"Sure," I said. "But it is likely that you had special reasons to drink. You were medicating yourself, as so many people with ADD do. Alcohol, marijuana, cocaine are all common. In different ways each of those drugs calms you down. But only in the short run. In the long run, they can all be disastrous."
"I think I knew that. I think that's why I never let myself develop a regular habit. I thought that would really be the end of the line for me." Jim paused. "Why cocaine? I thought that juiced you up."
"It does for most people. For people with ADD, however, it helps them focus. So, without knowing it, when they use cocaine they are medicating themselves."
"No kidding. Anyway, I'm just glad ! found out about this before I let my whole life get away."
"How did it affect your relationships with other people?" I asked. "I didn't think about it at the time, but all the things we've been talking about got in the way with friends and girls and everyone else. I wouldn't listen "
"Couldn't listen," I corrected him.
"OK, couldn't. But everybody else thought wouldn't. I'd be late for things, or I wouldn't show up at all, having forgot. I wouldn't hear things tight, so I wouldn't respond right you know the story. People thought I was arrogant or I just didn't care. I did have a short fuse, that much was true. When someone would call me on something, I'd just tell them to kiss off. Didn't make me real popular. But still I had friends. Most important of all, Pauline stuck with me. Sometimes I wonder why. I would forget things, not show up, get angry or depressed for no reason. I'd be talking to her, and then I would disappear into some daydream. I'd promise to do something with her, and then I would forget. Somehow, she didn't dump me. But it sure wasn't easy. We always seemed to be in the midst of some potential argument. There's always been a fight waiting to happen. When I would screw up at work, she offered encouragement, but I could tell she was thinking, What is it with this guy? I was thinking the same thing. I don't think I could have survived this long without Pauline. She's incredible. But the relationship has been awful tough on her. I'm just not an easy guy. I know that. I know I'm exasperating. I'm exasperating to myself. I wish to hell I weren't. Believe me, I'm not like this on purpose. I think Pauline believes that, too, deep down. Otherwise how could she have stuck with me?"
"She probably does. But you're a good guy, Jim. People put up with your annoying habits because you made it worth their while in other ways."
An important, and often overlooked part of both learning disabilities and ADD is the social consequence of having them. ADD can interfere with one's interpersonal life just as dramatically as it does with one's academic or job performance. To make friends, you have to be able to pay attention. To get along in a group, you have to be able to follow what is being said in the group. Social cues are often subtle: the narrowing of eyes, the raising of eyebrows, a slight change in tone of voice, a tilting of the head. Often the person with ADD doesn't pick up on these cues. This can lead to real social gaffes or a general sense of being out of it. Particularly in childhood, where social transactions happen so rapidly and the transgressor of norms is dealt with so pitilessly, a lapse in social awareness due to the distractibility or impulsivity of ADD can preclude acceptance by a group or deny understanding from a friend.
"I sometimes wonder how I made it this far without getting killed," Jim laughed. "Must be the luck of the Irish."
"Could be," I said. "But maybe you learned little tricks along the way without even knowing it. In a sense, having ADD was part of your ethnicity, too. It defined how you were, what was in your bones, just as much as your Irish heritage did, but in different ways."
Jim's treatment lasted about a year. It included psychotherapy once a week as well as small doses of medication. The psychotherapy was more like coaching than traditional psychotherapy in that it was educational, informative, directive, and explicitly encouraging. I cheered Jim on from the sidelines. I helped him build a new understanding of himself, taking into account his ADD, and I helped him build ways of organizing and structuring his life so that ADD wouldn't get in the way so much. The medication helped him focus and stay on task. As he put it, it took the static out of the broadcast.
We will discuss treatment in detail in chapter 8, but as an introduction, here is a synopsis of the most effective components of treatment. Note that while the medications used for ADD can provide remarkable help, they are not the whole treatment by any means. A comprehensive program works best.
SYNOPSIS OF TREATMENT OF ADD
1. Diagnosis: The first step in treatment is making the diagnosis. Often this carries with it considerable relief as the individual feels, "At last there's a name for it!" The therapy begins with the diagnosis.
2. Education: The more one can learn about ADD, the more successful the therapy will be. A thorough understanding of what ADD is allows you to better understand where ADD affects your life and what to do about it. It also allows you to take the key step of explaining it to other people.
3. Structuring: Structure refers to the external limits and controls people with ADD so urgently need. Such concrete, practical tools as lists, reminders, simple filing systems, appointment books, goals, daily planning, and the like can greatly reduce the inner chaos of an ADD life and improve productivity as well as one's sense of control.
4. Coaching and/or Psychotherapy: The person with ADD will greatly benefit from having a "coach," someone standing on the sidelines with a whistle around his neck calling out encouragement, instructions, and reminders, and in general helping to keep things going on task. People with ADD thrive with this sort of structured encouragement, and they feel lost without it. Group therapy can provide this most excellently. Traditional psychotherapy may also be indicated if depression, problems with self-esteem, or other internal problems exist.
5. Medication: There are several medications that can help correct many of the symptoms of ADD. The medication works like a pair of eyeglasses, helping the individual to focus. It can also reduce the sense of inner turmoil and anxiety that is so common with ADD. The medication works by correcting a chemical imbalance of neurotransmitters that exists in ADD in the parts of the brain that regulate attention, impulse control, and mood. While medication is not the whole answer, it can provide profound relief, and when it is used properly, it is very safe.
In Jim's case treatment went very well. By the time we parted company, he had changed his life. Within eight months he began to put together his own computer consulting business, specializing in some kind of software manipulation I never did understand, but one that few others could understand and a lot of people wanted, so his business grew. Being his own boss, he didn't have the kinds of troubles with superiors he'd had before. Of course, he did have to relate appropriately with clients, and this was a skill he worked on. He settled into his relationship with Pauline in a way that pleased them both. He had developed a series of techniques for managing himself, as he put it. No longer shooting himself in the foot, he was beginning to make use of the creative brain he'd always had.
Case 2: Carolyn
Carolyn Deauville came to see me one afternoon, "just to chat." When she made the appointment, she told me over the phone, long distance, in her rich southern accent, "Honey, I know what I've got. I just want you to sit there and nod and listen."
Carolyn strode into my office, all five feet ten inches of her, wearing a pastel orange chiffon dress with a white sash and a beige broad,brimmed hat. She wore peach-colored lipstick and smelled of a perfume that immediately filled the room, very pleasantly, but not subtly. Like her perfume, Carolyn filled the room quickly. "You don't mind if I do this?" she asked, lighting up a Vantage. Exhaling smoke, she opened her blue eyes wide and looked fight at me. "I feel like we're old friends. I've heard you speak. I've read some of your articles. We both have ADD. I'm a therapist, you're a therapist. Lord, we're practically neighbors. Except I'm from three thousand miles away in California."
"California?" I asked. "I would have guessed "
"From my accent, you would have guessed somewhere in the South, and you would have been fight, since I grew up in New Orleans. But marriage number two took me to the Golden Gate, and I've never been back."
"You said on the phone you just wanted to chat."
"I've been a psychologist for twenty years now and I've been specializing in ADD for the past ten. I've never told anyone my story, and I thought you'd be a good person to start with, since I liked you from the way you talked."
We agreed to have a few appointments. She was in town with her husband at a convention for his business. She'd be here a few days.
As her story unfolded, I had to marvel at her resilience and ingenuity. "I'm an orphan, or at least I used to be. My mother got pregnant and Catholic teenage girls in Louisiana in the thirties didn't have abortions. So here I am. I was adopted when I was two. What a mismatch my mother and I were. She was a wonderful lady and I love her dearly, but she was so ladylike and organized, and I, well, I wasn't. My mama couldn't civilize me, try as she might. I sat with my legs apart, I bit my nails, I let my skirt ride up, I got dirty all the time, I was a real pigpen. My first vivid memory is running away from Summation Bible School at age four. It was so boring. Jimmy Tundooras and I tiptoed out the back door and ran down the dirt road toward the river. After a little while Jimmy got scared and went back, but not me. I wandered all over town until I fell down asleep. They found me late that afternoon in a ditch by the side of the road. Did Mama give me what for. Must've wondered why she ever went to that orphanage.
"My next best memory is sitting on top of the water tower. Must not have been a day over six. Once I learned how to climb up to the top of that tower, I did it all the time. Sometimes, after I learned to read, I'd put a book in my teeth and climb up and sit all afternoon reading. Can you believe it? Whenever I drive past a water tower today, I shiver. They're very high! Back then I remember dangling my feet over the side and looking down and saying, 'O-o-o-o-e-e-e.'"
"Didn't anybody tell you not to go up there? I asked.
"Nobody knew I did," she answered in a whisper, as if it were supposed to remain secret to this day. "Oh, I was a devil of a kid, or so Mama said, but she loved me, too. It's just that I was always into things. Saturdays. I hated Saturdays. Some inexplicable uneasiness would come over me on Saturdays. I didn't know why then, but looking back I can see that it was because on Saturday all my sins of the week would be discovered. Mama was a schoolteacher and too busy to notice during the week, but come Saturday she'd inspect my clothes and find that one white cotton glove I needed for church was missing, or was filthy dirty. Or that I'd tom the sash for my dress. Or that a bunch of clothes were missing. I was in the habit of giving away clothes to the kids at the orphanage. I didn't know that I was adopted, so I don't know why I gave my clothes away, but I did. Mama would despair."
"And your father?" I asked.
"Daddy was like the pied piper. He loved children, and he loved me. Which was lucky, because I needed all the love I could get. Especially after I started school and after Warren was born. After all the trouble Mama had getting pregnant, what does she do but produce a menopause baby, Warren, my brother. He was an angel as much as I was a devil. They might as well have put a halo over his head. And school? Well, my first memory of school is getting spanked by Mrs. Kimble for not being able to lie still on my pallet. I never did lie still, or sit still for that matter.
"I was slow to learn how to read, but once I did, I was a voracious reader. Little Women, The Secret Garden, Hans Brinker these were my books. On top of the water tower, under the kitchen table, wherever I could find a spot to be left alone, I'd tug a book out of my pocket and read. Math was a disaster. They had flash cards, and one student would pass them out to all of us. I used to save my dessert to bribe whoever was doing the passing out to give me the easy cards. I especially liked the zero cards, one plus zero equals...? I always despaired when they had a dessert I couldn't sequester in my pocket or under my dress, like pudding. Even pie I got pretty good at hiding."
"You do sound like a happy kid, in spite of it all," I said.
"I was. I've always been happy. I think it's temperament, and it's the luckiest thing in the world. Even when I had every reason not to be, I was happy. I always found a way. Once, in second grade, I was being punished for having smacked Nancy Smitt by being told to stand behind a table away from the other kids. This was on a morning parents were coming through to visit, so it was supposed to be particularly embarrassing and humiliating for me to have to stand off to the side behind this table. Well, what did I do? The table came about up to my midsection, so I just robbed up against it and let my mind drift away as everybody passed through. I'm sure no one noticed, and I'm sure I hardly even knew that I was masturbating right there in public view in the second-grade classroom.
"I always did talk too much," Carolyn said, as if she thought she still did. But I didn't think so. I loved hearing her story, particularly the way she told it, from incident to incident, all in the thickest and softest southern voice. "The hardest thing about it all was getting teased so much. I was so reactive. All my emotions were on the surface. Someone would make a face at me, and I'd stick my tongue out right back. Someone would whisper something about me, and I'd jump on their back. Also, I cried really easily. Someone would hurt my feelings, and boohoo, the tears would come. Well, you know how kids hone in on that. So I was always getting teased. Daddy would coach me on how to ignore it, but I never could. In third grade I beat up two boys on the playground, and that was at a time when girls simply did not fight, let alone fight boys. Mama was mortified, but Daddy took me aside and told me he was proud.
"Poor Mama, she got mortified a lot. In sixth grade my teacher got so fed up with looking at my messy desk strewn with bits of paper, balled-up gum, a bent fork, and even old desserts that she took a few brown paper bags and emptied it all for me to take home to show my mother after school. Mama was mortified once again.
"She tried so hard to make me be a lady. I wanted to peroxide my hair, but she said no. What did I do? I was such a slob. I took lipstick and tried to streak my hair with that instead. It just became a greasy mess. I was forever stuffing my chest with rolled-up socks. Except I didn't do that very skillfully either. One day a sock popped out of my dress in tenth-grade science class. You can imagine the reaction.
"Somehow, though, I got through. All my reading must have paid off, because I scored high on achievement tests and got a scholarship to college. At the time, I was amazed I did so well on the tests, as was everybody else. There were even whispers that I must have cheated. But knowing what I know, I think I did well because I was so motivated I went into one of those hyperfocused states people with ADD can go into. For once Mama wasn't mortified. And I scraped my way through college and got into graduate school, which I did part-time since I was having babies. Then I quit school completely for a few years before going back and finishing my Ph.D. and becoming the woman you see sitting before you now."
"You never knew you had attention deficit disorder?" I asked.
"Never. Not until I diagnosed myself well after graduate school. What do you think? Do I fit the picture?"
"Yes, you surely do," I said. "How did you feel when you discovered you'd had ADD all along?"
"Just this huge relief. At last there was a name for it, especially all the emotional reactivity that got me teased so much. I had thought I was a typical female hysteric or something. Plus everything else. The not sitting still, the going up the water tower, the fights, being a mess, having trouble in school. Things fit into place. The best thing was getting a name for it. I'd pretty much figured out how to handle it by the time I found out I had it."
"Why did you want to see me?" I asked.
"To get a second opinion," she said. "I've only had myself to confirm my diagnosis."
"Well," I said, "it sounds like pretty classic ADD to me. We could get some testing to get further confirmation. But you could have done that already. And I think you know you have ADD. Are you sure there isn't some other reason you came here?" I asked.
Carolyn, who had told her story virtually without missing a beat or coming up for air, paused. She took her hat off, which revealed her whole face from broad forehead to pointed, definite chin, and she shook out her light brown hair. Tall, elegant, secure, she surprised me by what she said next. "I wanted you to tell me I'd done a good job," she said softly. "That sounds infantile, I'm sure, but you can't imagine what an effort it's been. Actually, I thought perhaps you would know how much it's taken, since you see so many people like me."
"Not many people like you," I said. "You never got any help along the way and you've overcome your obstacles just by intuition and persistence. You've done an amazing job, Carolyn. You've done very well. You should feel proud."
"Thank you," she said. "I needed to hear that from someone who really knew."
Carolyn's story is remarkable in some ways and representative in others. As a child, her symptoms were typical: hyperactivity, thrill-seeking, trouble in school, emotional intensity, and impulsivity. She also had many of the positive qualities that are often not mentioned when one hears about ADD: spunk, resilience, persistence, charm, creativity, and hidden intellectual talent. What was remarkable was that she was able to develop her talents without any special help. She did not get buried under the teasing she received; she did not lose her positive sense of who she was, or who she could be. In many ways the most dangerous aspect of undiagnosed and untreated ADD is the assault to self-esteem that usually occurs. Whatever talents these people may have, they often never get to use them because they give up, feeling lost and stupid. Carolyn is a wonderful example of someone who prevailed.
Case 3: Maria
Maria Berlin came to me for a consultation after reading a piece in the newspaper about ADD in adults. "I didn't know there was such a thing," she said, crossing her legs at the calf as she settled back into my overstuffed office couch. "My husband showed me this article in the paper, and I started to wonder."
"Tell me a little about yourself," I said. It is always hard to know where to jump in when I meet a patient for the first time. There is a standard way of taking a history name, address, presenting problem, and so forth but that can be overly structured and not give the person the chance to say what they really want to say. So I usually start with something that invites the person to say whatever he or she thinks matters. Of course, this can be misleading as well, because the inevitable jitters associated with the first appointment can lead one far astray.
Maria, however, got right into things. "I don't know what is wrong with me maybe there's nothing. Whatever it is, I've been like this for a long time. As long as I can remember. Since I'm now forty-one, that's a long time. My main problem is that I don't get around to doing the things I want to do. Maybe that's just the pace of my life. I'm married and I have two children, eleven and eight, and they take up a lot of my time. But I have been working on my Ph.D. for years, and the dissertation keeps sitting there, half-done, winking at me like a sleeping turtle. Sometimes I wish it would walk away and leave me alone."
"Do you have a regular job as well?" I asked.
"Yes. Well, when I want to, that is. I work at the library in town, and they're very flexible about when I come and go. What I've really been trying to do, aside from finishing my dissertation, is start an exercise clinic for women over forty at our local health club. I have a brochure I've been wanting to write for what seems like forever. The management of the place has been very receptive. If I ever get to it, they'll let me run it as my own business and if I pay them a small rent. They think it would be good publicity for the club."
"Your Ph.D. is in "
"Totally unrelated. English literature. Don't ask me what the connection between that and exercise is. I'm sure there is one somewhere, but I don't know where. My dissertation is supposed to be on Eugene O'Neill. I fell in love with O'Neill when I read A Long Day's Journey into Night when I was in high school, and that love continued through graduate school. But in case anyone hasn't told you, the best way to fall out of love with something is to write a Ph.D. thesis about it. I'm so tired of O'Neill I could spit. Isn't that sad? I thought at one time I had something original to say about him, but now I could care less."
"Do you remember what you had set out to say?" I asked.
"Oh, please," she said, "don't make me dredge that up. It had to do with the autobiographical impulse and transforming that into art. Sounds pretty unoriginal, huh. But I had a new twist on it, or at least I thought I did. Maybe it was all just a daydream."
"You got sidetracked?"
"Sidetracked?" she said with a big smile. "My whole life is one long sidetrack. I was supposed to marry Arthur, but instead I met Jim, and now we've been married for sixteen years."
"You haven't been sidetracked from him?"
"No, I haven't. He's my anchor. I don't know why he hasn't been sidetracked from me, but I don't think he has. 'Anchor' is the wrong word, actually. It makes it sound like he's holding me back. What he does is stabilize me. I don't know where I'd be without him."
Maria's energy and openness and her story so far were all typical of ADD, as was her tendency to get sidetracked, both in her life and in her conversation with me. "Tell me more."
"About what? I'm not trying to be a wiseguy, but what do you need to know ?"
"Well, tell me something about your childhood. In particular, what was school like for you?"
"School was a real mixed bag. I loved to read from day one, but I was a very slow reader. The public school where I grew up was OK, but not very challenging. I got fair grades. They always said I could do better, but I was more interested in looking out the window or at some other kid. The classroom material was just very dull. It wasn't where the action was, as far as I was concerned."
"You graduated from high school?"
"Barely, but I did. Then in college I did really well. Can you imagine that? Which is why I went to graduate school. But that was probably a big mistake. I should have quit while I was ahead. You see, my problem is I don't know whether I'm smart or if I'm stupid. I've done well, and I've done poorly, and I've been told that I'm gifted and I've been told that I'm slow. I don't know what I am."
"It is not unusual for people with ADD to have erratic, inconsistent educational histories like yours," I said. "Were you hyperactive as a child?" I asked. "Or any kind of discipline problem?"
"Oh, no," Maria said. "I was a good little girl. I wanted to please, whenever I could. I didn't want to please so much that I paid attention in class my father used to say, 'If you really want to make your dad happy you'll pay attention in class' but I never disobeyed or acted up or anything like that. I just always had a fantasy world I could go off into."
"You got bored easily?"
"I'll say," Maria answered. "But then, maybe I had dull teachers. I wasn't bored in college."
"What's in your way now?" I asked.
"The same thing that's always been. My erratic nature. One minute I'm there and then the next I'm not. I don't finish things. I get started, and then I drift off to something else, and then I've forgotten about what I had started on in the first place."
"How did you get into exercise?" I asked. Maria was obviously quite fit. She didn't look forty-one maybe ten years younger. Dark hair, red lipstick, bright cheeks she looked like she could have played a part onstage. I wasn't surprised that she had taken up exercise. Aside from being one of our culture's preoccupations, it is remarkably good therapy for ADD, both focusing and relaxing the mind.
"Like everything else, it just happened. I had a friend who wanted me to take an aerobics class with her, and I said that sounded like death, but she persuaded me to do it. To my complete amazement I loved it. I'm not a fitness freak; I just loved how the aerobics made me feel. And I liked the social aspects of it. So I began to hang around the club, took extra classes, qualified as an instructor, and came up with this 'over-forty' idea, which I still think is a great idea but one I'll probably never get to."
"How have you dealt with yourself so far?" I asked, thinking as soon as I asked it that it was a dumb question. But Maria seemed to understand what I meant.
"Just by winging it. I thought I had a screw loose somewhere. I went to a shrink once. It was when I was still very invested in trying to get my dissertation done and I thought maybe I had some kind of block he could cure me of. But we really didn't get anywhere, so I stopped going. Now you."
"Yes, now me," I said. "At your husband's urging?"
"No, this was my idea. He just showed me the article. What do you think? Is there any hope for me?" she asked with mock melodrama.
"You're joking," I said, "but I have a hunch this has been more painful for you than you let on."
"Yes, yes it has," Maria said, looking past me out the window. "It's such an insidious thing. I've always known there was something wrong, but I thought it was dyed into me, if you know what I mean. But with two kids, a husband, and a world to keep up with, I don't let myself dwell on it too much. It sure would be nice, though, to begin to finish things at least."
"Yes," I said. "It's been very frustrating for you. How about reading? Can you read OK?" I asked.
"If by OK you mean 'Do the words get in?' then yes. But I'm a very slow reader. Always have been. Plus I get distracted in the middle of a page and there's no telling when I'll come back."
"Maria," I said, "I think you might have ADD. We'll want to do some tests and talk some more about your history, but everything you've said so far makes me think you've had ADD ever since you were a child. The daydreaming, the way you read, the getting sidetracked, your erratic nature, as you call it, your inconsistency, and your general sense of not knowing for sure how bright you are, all these things may be manifestations of ADD. You've compensated well, which is to say you've found ways of getting along, but you haven't done the things you've wanted to do."
"What does that mean? Can my life be different?"
"It is always difficult to answer that question in advance," I said. "You just don't know how the treatment for ADD will work before you try it. But, yes, things can be different if the treatment works."
It turned out that Maria did not respond to medication. While about 85 percent of adults will benefit from one of the several medications that are used for ADD, about 15 percent do not, for one reason or another. Some people have side effects to the medication they cannot tolerate. Some people simply find they do not like the way it makes them feel. Some people do not want to try medication at all. And for some people, like Maria, the medication just does not do anything.
However, as we have mentioned, there is more to the treatment for ADD than just medication. Education, behavioral modification, and psychotherapy all can help. Maria derived benefit from all of these.
In the first phase of her treatment we focused on developing an understanding of ADD. As Maria learned about the syndrome, she was able to rethink many of her long-held views about herself: that she had "a screw loose," that she was not competent, that she was defective.
As she began to see how many of her problems related to her being unusually distractible, we began to set up ways of restructuring her time to help her focus. She began to employ traits she knew about herself but had not used to best advantage: that she worked best in short spurts; that exercise helped her focus; that she benefited from lists, reminders, schedules, and rituals; that large, seemingly overwhelming tasks could actually get done if she broke them down into a series of small, manageable tasks; that she needed frequent feedback and encouragement; that it helped her to have someone, in this instance me, act as a kind of coach, keeping her on track.
This was not traditional psychotherapy, but a variant of therapy that I call "coaching" to stress the active, encouraging role played by the therapist or "coach." I would not tell Maria what to do, but rather I would ask her what she wanted to do; then I would remind her of what she had told me, regularly and repeatedly. One might say that at the beginning of her treatment we agreed upon a "game plan," and that my role as coach was to remind her of her goals and objectives in an encouraging way, always with an eye toward keeping her on track. People with ADD can get off course so easily, they can so frequently get "sidetracked," to use Maria's term, that it can be very helpful to have an outside person keep them engaged.
Done this way, the therapy can act as a structuring force in the person's life, bringing her back, time and again, to where she wants to be but has trouble staying on her own. This is not psychoanalytically oriented psychotherapy, in that it does not depend upon the development and interpretation of transference, but the therapist does stand ready to receive and discuss the individual's hopes, fears, fantasies, and dreams. And such coaching therapy does encourage the development of insight. Indeed, insight is one of the most powerfully transforming factors in working with people with ADD.
We should add that both authors of this book respect the value of psychoanalysis, both in treating patients and in researching and understanding human nature. Psychoanalysis remains the definitive and most thorough treatment available for what is commonly called neurotic conflict or pain. We do not recommend it as a specific therapy for ADD indeed, psychoanalyzing someone with undiagnosed ADD can be frustratingly ineffective but once the ADD has been diagnosed and treated, the psychoanalysis can proceed apace. Certainly, the kinds of neurotic conflicts for which psychoanalysis is the definitive treatment can occur in people who have ADD, and the treatment for ADD will not resolve those conflicts. Such people can benefit greatly from psychoanalysis as long as their ADD is understood as well.
Maria rearranged her view of herself and her way of running her life. In our work together the combination of education, encouragement, "coaching," and insight led Maria to a new place. She completed her brochure for the health club and opened her business. It did very well. She decided she did not want to write her dissertation, that, really, she had never wanted to. She had been keeping it alive, as many people with ADD do, as an organizing principle in her life, something that although it regularly and predictably emanated pain and anxiety, still provided an axis around which she could organize. She replaced her daily mantra of"I haven't done my thesis, I must do my thesis" with more useful self-directions. As she began to achieve success at something she really wanted to do, that activity became her new, and far more healthy, organizing principle. Most of all, she developed an awareness of how to work within herself, making the most of her abilities, while learning how to work around her limitations.
Case 4: Penny
Penny McBride's parents came to see me after Penny's fifth-grade teacher suggested she get a psychiatric evaluation. "I don't know what to think," her mother said at our first appointment. Her hands were interlocked at the tips of her fingers and she was looking down at them as she spoke. "I hate to think that we've done anything wrong."
"Coming to see me doesn't mean that you've done something wrong," I said, noting to myself that it is still the case, although much less so than it was twenty or thirty years ago, that consulting a psychiatrist about your child carries a stigma in many people's minds. "What is going on with Penny?"
"She's falling behind," her father said. "That's all. She's a good girl. Never any trouble."
"She just daydreams all the time," her mother picked up. "Ever since I can remember, she's been my little dreamer, my faraway child "
"Tell him about the stories," the father interrupted.
"She's my youngest, my baby," Mrs. McBride continued, holding one finger up to her husband as if to say, Just one minute. "We had four children two years apart and then six years later Penny appeared. I had more time for her than I did for the others. She was easier because she was quieter, more like me, I guess, than the four boys. I loved the boys." She paused and looked out my third-floor window at the trees beyond, seeming for a moment to be lost in remembrance of her sons. Then she clicked back into the room. "But Penny and I were more tuned in to each other from the start, I think. When you've had four boys and never had a girl, well, you forget what being a girl is all about almost, and when Penny arrived, nothing against you, Joe, or the boys, but it was as if a compatriot had joined my life. I do not mean that we were enmeshed or entangled or whatever the psychological term is for an overinvolved mother, because we were not-believe me, we weren't. But in a house full of males, it was good to balance things for me a bit. Anyway, the stories Joe was referring to are stories Penny and I made up. We called them the Faraway Stories, about children who lived in Faraway Land. The name came to me when I was telling Penny a story when she was three and the look in her eyes was so faraway. I wanted to come join her wherever she was, so I said let's go to a faraway land. And that's where the stories started."
"She liked the stories?" I asked.
"Oh, she loved them. I could calm her down almost anytime with a story. Not that she got upset very often."
"Could she add to the stories?" I. asked. "Make things up?" A crude assessment of imaginative and linguistic ability is the capacity to add on to a story line.
"She was better at listening," her mother said. "I could tell story after story and she would sit next to mc rocking and smiling. If I asked her a question, it would become clear some of the story had passed right by her. Because she was so faraway, I'd tell myself. But I didn't know what I meant by that. It was just a feeling I had."
"It sounds like you were well attuned to her," I said.
"But now I think she wasn't getting it at all. She did love to listen, though." Regret began to fill Mrs. McBride's voice. "Why didn't I get some help sooner?"
Joe McBride, a ruddy-faced man smartly dressed in a business suit and a muted purple and turquoise tie, put his arm around his wife as she started to cry. Sitting together on my office couch, they looked frightened and embarrassed. "What Polly means," Joe said, "is that we had no idea anything was wrong. Penny was a quiet little girl, that's all."
"I understand," I said. "Try to go easy on yourselves. You're obviously concerned parents. It was hard for you to come here at all. Let's sec if I can't make it worth your while."
Wearing a red wool sweater, jeans, and her slightly graying blond hair up in a bandanna, Polly looked like she'd come directly from a hike with her children. She was a casual contrast to her more packaged-for-the-public husband. "It's a bit of a shock to the system to hear your daughter needs to see a psychiatrist," she said, wiping her eyes not with the handkerchief her husband offered her but with the first knuckle of each hand.
As we began to get more history and the key to making a diagnosis in this complicated field is through the story of the child's life, rather than through complicated tests what emerged was a picture of an intelligent gift who had some language and attentional problems.
Problems in the development of language can occur at a number of levels and in a number of ways. One can have difficulty with input or with output. Input problems, or what are called receptive language problems, can affect both what you take in and what you are able to put out, because what you put out is dependent on what you were able to take in. Output problems, or what are called expressive language problems, can affect what you are able to write or speak as well as what you are able to conceptualize within your brain.
Although a full discussion of learning and language problems, including dyslexia, is well beyond the scope of this book, we cannot discuss ADD without some mention of language problems and learning disabilities in general since they so often coexist with ADD, each usually making the other worse. In addition, we will have to touch on other neurological problems that can mimic or exacerbate ADD, from the obvious, such as hearing impairment, nearsightedness, or a nerve problem that affects articulation, to the more subtle aphasias and memory problems and seizure disorders.
I asked Polly if Penny were late in learning to talk. Although developmental milestones, as these moments of specific achievement are referred to, are not etched in stone, they do give a quick reference point as to whether it is a developmental delay worth investigating. You also have to be sure you and the parent have the same definition of "early" or "late." Some parents consider their child late if he or she cannot recite Shakespeare by ten months, while others consider no language at all until age three just fine, if not a relief.
"Yes, she was," Polly said. "Her first words didn't come until about twenty-two months, and little sentences didn't come until she was three. Our pediatrician suggested that I read to her a lot and make up stories together. That's where the Faraway Stories came from."
"She liked them?" I asked.
"She loved them. That's what was so touching. Even though I knew she wasn't getting it all, she'd sit still and ask to hear more stories. And if I stopped in the middle, she'd pull on my ann and say, 'I want more!'"
"Could she play with words at all?" I asked.
"What do you mean?" Polly responded.
"You know, make rhymes, repeat rhymes, make up nonsense words "
Polly, who was leaning forward eagerly, interrupted to answer. "She couldn't do rhymes exactly. But she made up words all the time. She couldn't think of the right word, so she'd make one up. Instead of saying we're going to the airport, she'd say we're going to the plane place. Or instead of birthday present, she'd say box-day thing."
"You remember these well," I said. "What would you do when she said them?"
"I would correct her. Shouldn't I have?"
"No, it doesn't matter at all. I'm just trying to get a sense of what this was like for her emotionally."
"She would say the new phrase I told her. I didn't want her to think she was stupid."
"Did you think she was stupid?" I asked.
"No, not at all," Polly said emphatically. "If I'd thought she was stupid, I probably wouldn't have corrected her so easily. But I knew she was smart and would want to get the right word. Plus, I thought her ability to improvise and make words up proved she was smart."
"You're right," I said. "It sounds like her problem was in finding the right word in her storage bin, so to speak. Or in finding the right storage bin. Or in remembering the word. Or in transporting the word from the storage bin to her mouth."
"This sounds pretty complicated," Polly said.
"Well, it is," I said. "But that's really good news that it's complicated, and that we know that it's complicated. Not so long ago we seemed to think all this was very simple. You were either smart or you were stupid. Oh, we had some ultra categories like genius and moron, but it was all based on a really simpleminded notion of intelligence. Smart versus stupid. And that was the basic ball game. But lately we've been finding out how complicated intelligence and learning really are. For example, Mel Levine, one of the great figures in the world of learning problems, talks about seven kinds of memory, and you can have a problem with any one of them that can interfere with learning. That's what I was referring to when I was talking about getting words out of the storage bins. I just wanted to think of some analogy. You get what I mean?"
"Yes, I do, and it's exciting," Polly said.
"What about in school?" I asked. "What happened then?"
"She fell behind in reading from the start," Joe said a little glumly.
"That's not quite true, honey," Polly said, gently containing her annoyance with his performance-appraisal approach. "She was more interested in books than any of the kids. She just couldn't comprehend them all. But she always wanted me to read to her and she still likes to hear the Faraway Stories even to this day."
"What about the daydreaming?" I asked.
Polly handed me a stack of papers. "These are teacher reports going back to first grade. You'll see they all say about the same thing. 'Tunes out.' 'Seems shy.' 'Can't pay attention without frequent reminders.' One of the teachers even wondered if she might be depressed, she seemed so quiet all the time. But it wasn't until this year that Becky Truesdale "
"Who?" I interrupted.
"Becky Truesdale, her fifth-grade teacher. She was the first to bring up the possibility of ADD or a learning disorder. I have to admit I'd never even heard of ADD. I only knew about hyperactivity in boys. But Becky says girls can get it and sometimes there's no hyperactivity, just tuning out."
"Becky's right," I said. "Girls can have ADD as well as boys. Hyperactivity is the old name for the syndrome. More recently, the label ADD was invented to focus on the symptom of attention inconsistency these kids have. A lot of girls who have it never get diagnosed. Instead, they're just thought of as shy or quiet or even depressed, like Penny." In giving the McBrides an overview of the ADD syndrome, I stressed that ADD was often found in particularly creative, intuitive children. "Lots of kids who have ADD also have something else, something we don't have a name for, something good. They can be highly imaginative and empathic, closely attuned to the moods and thoughts of the people around them, even as they are missing most of the words that are being said. The key is to make the diagnosis early before these kids start getting stuck in school with all kinds of pejorative labels. With some help, they can really blossom."
I took a few minutes to read through the teacher comments which, as Polly had told me, were full of descriptions of absentmindedness or daydreaminess or unfinished work. The comments reminded me of a term Priscilla Vail uses in reference to children who don't quite fit any mold exactly: conundrum kids.
"Would you like to meet Penny?" Polly asked.
"Of course," I said. "But why don't I go to her. Often kids with ADD can focus very well in the one-on-one situation of the doctor's office. In here there is structure, and novelty, both of which drastically reduce ADD symptoms. Even the fear a child sometimes feels in a doctor's office can increase concentration, and so mask the ADD symptoms. That's why it can be so easy for a pediatrician to miss the diagnosis. The symptoms just aren't there in the office. In a classroom you get a truer picture. So may I visit?"
Polly and Joe McBride enthusiastically agreed and made arrangements with Becky Truesdale. Schools are usually quite receptive to this kind of visit. They are eager to share what they know. What they have to say is usually of great value.
I slipped quietly into the classroom during what looked like math period and took an empty chair along the bookshelves in one comer of the room. Another teacher who had guided me to the classroom pointed Penny out before she left. I watched her, trying not to stare. She was a cute little brown-haired girl with a ponytail, wearing a yellow dress and Nike sneakers. Her desk was where I'm sure she wanted it to be: at the back of the room, right next to a window.
Now I should put in a word here about windows and schools and ADD. One can easily get the idea from a school that it thinks windows are the devil's own work, placed in schoolrooms as a means of temptation, pure and simple. The good children look away from windows, while the bad cannot resist their transparent allure, free passage to the sky and trees and daydreams beyond.
People with ADD do look out windows. They do not stay on track. They stray. But they also see new things or find new ways to see old things. They are not just the tuned-out of this world; they are also tuned in, often to the fresh and the new. They are often the inventors and the innovators, the movers and the doers. Good Do-Bees they may not always be, but we should be wise enough not to force them into a mold they'll never fit.
But what of these devilish windows? Is it so bad a sure mark of educational decline to look out them? I wonder instead if it isn't the duller child who does not look out windows.
Penny's eye certainly found its way there. As she sat, her right cheek comfortably contained in the palm of her right hand, the fingers of her left hand tapped soundlessly on the wooden desk while she gazed out the window. I looked to see what she saw, but I could only see sky and an ascending branch of a nearby tree. That's one thing about window-staring: you can never really tell what the other person is seeing out there.
Every now and then, usually in response to a noise of some sort, Penny would look toward the blackboard and the numbers that were accumulating. Today's board was sprouting fractions by the minute. Penny must have seen something in them because she'd wrinkle her brow now and again when she'd look at them. She didn't seem troubled, just serenely uncomprehending. Then she'd brush back her hair, and, as if following the trail of a speck of dust, slowly turn her head back to the window. She made no noise. She caused no disturbance whatever. If anything, her serenity lent a calming influence to the classroom. It was easy to imagine how she could go unnoticed over the years.
I introduced myself to her after class, as there was a break for recess. Her parents had told her I'd be coming. "Hello, Dr. Hallowell," she said with a big smile. "My mom said you're a nice man."
"Well, you have a nice mom," I said. "Did she tell you anything else?"
"I don't think so," Penny said, her face contorting into a there's-something-I'm-supposed-to-remember-but-I-can't look.
"That's OK," I said. "Do you want to get outside for recess?"
"Mom said you might want to talk to me," Penny said.
"Just for a second. Your mom and dad came to see me to ask if I could help out with how things go for you in school and stuff. Do you like school?"
"Oh, yes," Penny said enthusiastically.
"What do you like about it?" I asked.
"I like the teacher and I like the other kids, and I like the walk to get here from home and I like the time to sit and listen "
"What do you listen to?" I asked.
"Oh, to anything," Penny said. "Mostly my own thoughts. I like to make up stories in my head. Mom and I have a kind of game "
"She told me about it," I said. "Sounds like fun. Is that what you were doing during math class this morning?"
"Yes," she said. "I was making one up about fat old men who looked like sixes and funny old women who looked like nines and they went dancing together and turned into eights."
"That's great, Penny," I said. "Do you think the eights will get back to sixes and nines?"
"Maybe," she said, pulling at the yellow-spangled stretch band around her ponytail. "I was actually going to have them lie down and become binoculars that could see very far away."
"All the way to Faraway Land," I said.
"Yes," she said, blushing a little bit that I knew the name of the place in the stories.
"Is there anything you don't like about school?" I asked.
Penny looked down at her sneakers. "I'm behind all the time. I don't get the homework."
"Maybe we can find you some help with that," I said. "Recess is almost over, I bet. Maybe we could meet sometime later when you're not in school."
"Sure," Penny said. "But you'll have to speak to my mom. She makes all my appointments."
"Of course," I said. "Great meeting you, Penny. See you later."
Becky Truesdale was a young teacher just out of a teaching internship at a private school near Boston. She knew a lot about ADD and learning disabilities. "I'm so glad you could come," she said to me. "I didn't want to call on Penny in class so you could see how she is when she's left alone. She's really smart, you know."
"Mmm," I said, "and she seems happy, at least today." I thought I heard a trace of a southern accent in Becky's words. "Are you from the south?" I asked, the impulsivity of my own ADD overcoming the tact and sequentiality I should have given the exchange.
"Why, yes," Becky said, not annoyed by my change of subject. "I grew up in Charleston until my family moved to Maine."
"Quite a change."
"That's for sure. And you?"
"I actually lived for a few years in Charleston myself," I said. "As a kid." We paused. "How long have you known Penny?" I asked.
"Just since the beginning of the school year. Six weeks. Not long enough to know her well, but long enough to like her. She reminds me of a young artist or something, sitting in the back daydreaming."
Do you think she's depressed?" I asked.
"No," Becky said with a laugh. "Far from it. She brightens right up whenever you talk to her. The other kids like her. Even when she stands off, they don't pick on her. It's as if they accept that that's just her way."
"What is your main concern about her?" I asked.
"That she really isn't with us," Becky said without hesitation. "And I'm afraid that the further she goes in school the more of a problem that will become. Even in this class she misses a lot, but somehow she compensates. Still, I know she could be learning more."
Becky and I talked until the end of recess. I thanked her for her help and said goodbye, promising to stay in touch.
There was a list of conditions in my mind that could explain Penny's situation. After I met with Penny in person again, met with her parents once more, and got some neuropsychological testing done, that list had narrowed to two: attention deficit disorder without hyperactivity and both expressive and receptive language disabilities.
ADD exacerbates learning problems in the same way that nearsightedness does: you can't focus as well as you should, so you are not able to use the talents you have to the fullest. The first step in treatment is to get glasses, or treat the ADD, and then reassess the extent of the residual learning disability.
Just making the diagnosis, giving a medical name with a rational treatment to what Penny's parents had thought was an immutable quirk of temperament, helped a lot. Once everybody understood what was going on, we started medication. While the medication by itself would not be sufficient treatment, the results in this instance were dramatic and quick.
There are several medications used in the treatment of ADD. They all help the individual to focus better. In a sense, they act like internal eyeglasses, increasing the brain's ability to focus on one task over time while filtering out competing stimuli or distractions.
Of the various medications available, we chose Norpramin for Penny. Norpramin is in the class of medications referred to as the tricyclic antidepressants. Although medications in this group are called antidepressants, they have many other uses than for the treatment of depression, including the treatment of ADD, both in children and adults. The most common other group of medications used to treat ADD are the stimulants, which include Ritalin and Dexedrine. Used properly, both groups are extremely safe and effective. We chose Norpramin for Penny because it can be taken just once a day, instead of the two or three a day required for the stimulants.
Within a few days of Penny's starting medication, her parents as well as Becky were on the phone to me. They were all amazed. She was tuned in in class, focused on the work at hand, participating actively and creatively. Most of all, she was really enjoying school, and in ways she had not enjoyed it before. She was enjoying learning. The medication's only side effect in Penny's case was mild dry mouth, caused by the anticholinergic property of the tricyclics (that is, they block the neurotransmitter acetylcholine, which mediates various bodily functions, including salivation) as happens with many over-the-counter cold remedies. This is tolerable and may be counteracted with a Life Saver or other lozenge. The medication did not take anything away from Penny; she could still daydream when she wanted to.
While this was only the beginning of the treatment, it was in many ways the most moving part for everyone, including me. As Penny's mother put it to me in one of our follow-up visits, "It's as if a veil has been lifted from Penny's eyes. She can see us and we can see her. She's still my dreamer, but now it's on purpose that she dreams."
Copyright © 1994 by Edward M. Hallowell, M.D., and John J. Ratey, M.D.