PRISONERS OF TIME

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This article appeared in the November 11, 1990 issue of the Boston Sunday Herald Magazine.
Dr. Robert Weaver is a prisoner of time, a constant captive of the moment. He is afflicted with Attention Deficit Disorder (ADD), a neurological condition traditionally associated with hyperactive children. "Every minute of every day, it's a real struggle to use my intellectual mind to picture just what the consequences of my actions might be. Others do this automatically. But people with ADD don't. Consequences are just not there for us, even positive consequences of our actions."

Recent research is telling us that the neurological disorder ADD, long associated with hyperactive children, is a hidden scourge ruining the lives of millions of adults - many of whom don't even know they have it.

Dr. Robert Weaver is a prisoner of time, a constant captive of the moment. He is afflicted with Attention Deficit Disorder (ADD), a neurological condition traditionally associated with hyperactive children.

He describes a typical incident in his day: "I tell my wife, 'Sure, I'll take out the trash.' But then, just as I'm about to get up and do it, I'm drawn to something on the TV.  A stupid show or even a commercial. But my mind is so captured by it, I literally can't get up and take out the trash.

"Now, a "normal" person may be drawn to the TV too. But that person would be able to bring his feelings forward and say, "Yes, this show has caught my attention, but I'd better get that trash out or my wife will get mad." So he would bring the trash out, then come back in and watch the show. Not me. I have ADD. And one of the problems with ADD is that you don't bring the consequences of your actions forward. You are stuck in a moment in time. And as soon as the moment shifts, what happened before becomes much less important than what has caught your attention at the current moment.

"So, sure, I had every intention of bringing the trash out. I may have even volunteered for the job. But before I got to it, my mind was captivated by what popped into it at the next moment. So that what I had planned to do before just gets lost.

"Every minute of every day, it's a real struggle to use my intellectual mind to picture just what the consequences of my actions might be. Others do this automatically. But people with ADD don't. Consequences are just not there for us, even positive consequences of our actions.

"Believe me, it's hard."

"The example I used of taking out the trash might seem like a small thing, but think of what always being stuck in time might do to relationships or your work. People think that what you were doing or whatever made you late must have been more important to you than them. You promise your wife you'll take the garbage out or be home right at 6, then you aren't."

"Your actions make it seem like you just don't care. It's devastating," says Weaver, a neuropsychologist, who heads a clinic in Weston that specializes in learning disabilities and ADD.

Richard Lavoie, an educator in the field of learning disabilities describes ADD as "looking at the world through a wide-angled lens with everything coming at you at the same time."

"The big misconception is that people with ADD have no attention span," he said at a conference on the disorder held last spring in Plymouth. “That's not true. People with ADD pay attention to everything. They can't distinguish (between) what's important to pay attention to and what's not."

Katherine Perry was diagnosed with ADD when it was discovered that her son suffered from it. She compares herself to "a cat constantly chasing its tail."
"When I was growing up," she says, I always felt that I was smart enough, but I could never seem to accomplish what my peers were accomplishing. I could never finish my homework. I would try and try, but I was constantly distracted. Anything would distract me, a TV commercial, the sound of a car going down the street.
"And it isn't any better as an adult. I'm like a gerbil on a wheel. If I'm cleaning my house, it takes me forever," Perry says.

"Let's say I start cleaning in the bedroom. I'll pick up a dirty sock. Instead of leaving it to bring downstairs later, I'll go to the washing machine. Then I'll get distracted there. I'll notice the dryer is full, so I'll decide to empty that first. But before I get to emptying the dryer, I'll see that the table where I fold the clothes needs to be wiped off, so I'll start that task. This goes on and on so that nothing ever gets completed because I'm always off on a tangent. Now this may seem minor, but ADD affects every aspect of your life.

"It's not uncommon for me to be driving down the street and suddenly have no idea where I am going. I know this happens to non-ADD people. But for me, this syndrome is chronic. And it's scary. You are like that all the time. As an adult, you learn to compensate. I make lists; I try to get exact directions to where I'm going. I've learned to structure myself. But if something upsets my routine, it can blow my whole day.

"Another problem I have is that I can't sit still. If I am in a slow checkout line in a store, sometimes I'll just have to leave the things there and walk out. Yet another problem is impulsivity. I'll go to buy one thing and they don't have it, but I'll come out with 10 things I absolutely had to have at the moment.

"It puts barriers in front of you and it has a profound effect on your life. So when I was finally diagnosed, it was very liberating for me," says Perry, who now runs a support group for parents of ADD children in Attleboro.

Robert Weaver and Katherine Perry are among a growing number of adults who are discovering that they are afflicted with ADD, an often misunderstood and misdiagnosed neurological disorder which until the 1970's was thought to occur primarily in pre-adolescent boys and disappear after puberty.

Although the incidence of ADD in adults was discovered almost 20 years ago, it's only recently that the illness has been recognized by members of the medical community.

But research, which has grown over the ensuing years, now indicates that ADD is far more common and complex. Estimates of incidence among school age children range from 3 to 20 percent and, according to reports, at least two million adults nationwide suffer from it. Yet the condition remains a mystery - particularly in how it affects adults - within the medical profession, as well as the public.

"When I was first diagnosed in 1987 I went to all kinds of doctors trying to get help, yet no one in the medical community could help me," recalls Bob, a 38-year-old North Shore father who requested his real name not be used. "It wasn't until I went to a support group for parents of ADD kids that I found out that medications, like Ritalin, are effective for adults as well as children."

The latest medical research indicates that ADD is a neurological disorder, or group of disorders, that is caused by underproduction in the brain of chemicals called catecholamine neurotransmitters. Dr. Larry B. Silver, clinical professor of psychiatry, Georgetown University School of Medicine and expert on ADD, says this lack of neurotransmitters is analogous to a filter system that doesn't work properly.

Most information processing, he explains, is handled in the lower part of the brain. Messages to this part of the brain are transmitted by the neurotransmitters. In normally functioning people information that is unimportant is filtered out, so that they don't have to think about it. But people whose neurotransmitters aren't working properly are always on overload: They are distractible and often hyperactive.

At least to 40 to 60 percent of all cases of ADD are thought to be genetically disposed. The majority of adults who are diagnosed with this condition have sought treatment because it was discovered in their children.

The old school of thought felt that boys were 10 times more likely to have ADD than girls. However, current theory is that the condition in girls may often be overlooked because they tend to have fewer behavior problems than boys. In girls it is more likely to manifest itself as daydreaming or spaciness; these girls are then thought to be not very bright, and they tend to fall further and further behind in school.

The real ratio, suggested Dr. Sally Shaywitz of Yale University School of Medicine, is probably two to four times more occurrence in boys than in girls.
And there have been more unusual findings lately.

According to Dr. John Taylor, author of "Helping Your Hyperactive Child," fair-featured people comprise 50 percent of the known ADD cases, and about one half of all students with learning disorders have ADD.

Another surprising development that has recently emerged is clinical observation showing that adopted children are more likely to suffer from this disorder, although the reason is unknown.

Research also indicates that non-generic causes of the disorder may be linked to prenatal or natal care. Studies have shown that smoking, drinking alcohol, and using drugs during pregnancy may be related to ADD as may be birth traumas such as lack of oxygen during delivery. Exposure to toxins, like lead, may also play a role. And, it is believed that in a very small percentage of the cases, allergies to foods and substances, like food dyes aggravate the disorder.
The primary symptoms of ADD - distractibility, short attention span, impulsivity, disorganization, and, in children, hyperactivity - need not all be present for a diagnosis. Some people may exhibit some but not other characteristics of ADD. And experts note, the severity of the disorder and the symptoms vary tremendously, so that many cases are difficult to detect.

In the past, the most common manifestation of ADD was thought to be hyperactivity. Now, however, experts say that hyperactivity need not be present at all for an ADD diagnosis. Some people may exhibit opposite behaviors like being withdrawn or retreating into quiet daydreaming.

Linda Harrison and her husband, Walter, a North Shore pediatrician, know just how different the symptoms may be. All three of their children have this disorder in wildly varying degrees.

“My oldest daughter, who is now in college and doing very well, was evaluated in the fifth grade," recalls Harrison. “I realized that she had a problem when I took her to the library. Although she was bright and did good work, there were some things she was absolutely incapable of doing, like figuring out how to use the card catalogue. Doing any kind of research or reports were a real problem for her. When she was evaluated at Children's Hospital, we found that she had a sequencing problem.
"With my {oldest} son, the symptoms were quite different and much more severe. He was hyper. Out of the 14 symptoms they use to evaluate ADD, I think he had all of them. He was impulsive, he blurted things out in class, he was always getting into things, he was impatient. And although he is quite gifted, he still gets B's and C's.
"Our youngest was quiet and placid. In nursery school, he was very sweet, but he couldn't complete projects. Later on, in school, he would be spacey and disruptive although we didn't see that behavior at home. Although he is bright, he couldn't read. We had him tested for dyslexia and it came out that he had ADD."

Because the symptoms of this neurological disorder cover such a range, doctors now divide diagnoses generally into two groups: Some who might in the past have been labeled as suffering from ADD, are now diagnosed as having ADHD (Attention Deficit Hyperactive Disorder).

And although they are detected more frequently today, ADD and ADHD are still often mistaken for psychological problems like depression or antisocial behavior. Quite often, people with ADD are treated for other illnesses while their primary problem remains masked.

"I had trouble in school and at work all my life," recalls Bob. "People thought I was lazy, had poor study habits. I was always called a spaceshot. One of my problems is that I just don't pick up on non-verbal cues. Everything is black and white to me. If you don't say it or it's not written out, I just don't get it."

"So, all my life I didn't have many friends and had trouble at work because people communicate a lot by innuendo. I was always losing jobs because I though I was doing OK. I never got the little hints my bosses or coworkers dropped. So for me, it was a real relief to find out that what I had was a neurologically-based condition. Knowing that I wasn't just lazy or stupid was helpful. But I still have to deal with all the psychological baggage that comes with having that kind of a self-image all your life."

While it previously was thought that ADD disappeared in adolescence, it is now believed that only the hyperactivity associated with ADD ceases or lessens with puberty. Other difficulties with attention spans, organization, and impulsiveness persist. And this can have disastrous results.

Frank Wolkenberg, a writer afflicted with ADD, wrote in an October 11, 1987 New York Times Magazine article that studies have shown that 50 percent of teenage victims (of ADD) get in trouble with the law. As adults, ADD sufferers run a greater than average risk of substance abuse and sociopathic behavior generally ... and adults with ADD also seem more accident prone."

Virtually all of the experts on ADD agree that research findings are constantly changing how we look at ADD. “I think we are finding that this isn't one simple disorder, but a group of disorders and hopefully new research techniques will enable us to isolate them," says Dr. Mel Levine, a professor at the University of North Carolina, Chapel Hill, and one of the top researchers in the field.

"If you are reading all of the literature and getting more and more confused about ADD, then you are probably on the right track," says Dr. Len Rappaport, director of child psychiatry at Children's Hospital. "We don't know exactly what causes it. The symptoms are tricky. They can be easily confused with other problems. ADD is probably under- and over-recognized. It's a very confusing area."

Barbara Schram knows only too well how confusing and difficult the path to an ADD diagnosis can be. After changes in schools and years spent in countless sessions with psychologist and psychiatrists, her oldest son was not diagnosed with ADD until he was in the fifth grade - even though his case was typical.
"When he was a toddler he was incredibly active," she says. "He was like a top. He'd just whirl around. He was hard to discipline. I was always the mother who had to stay at the birthday parties because I never know what he might do or get into.

I sent him to a progressive day care center and kindergarten and he did OK there. He was a handful, but he was so cute he could get away with it. But the nightmare began when he started in public school in Brookline. Two weeks after he started school, I got called in. He couldn't sit still for more than four seconds. He was disruptive. The teacher was beside herself. He was clearly bright. He could learn but he was physically incapable of staying in one spot. I was told it must be psychological.

"My background is as a social worker. I have my Ph.D. in education and I teach teachers. But even I had no idea of what was going on with my son. I naturally assumed it must be me. I was doing something wrong. There were also other things. Both of my sons are adopted. They are black and I am white. I'm a single mother. So I figured it was all psychological. It had to be my fault, I though. We went to therapy but things continued to disintegrate.

"It was so humiliating. At school they said I was coddling him because he was totally out of control. He hated school. But at home, things were better. I got very rigid, very organized. I began modifying my behavior, changing how I dealt with him. And I noticed, when he had a teacher who could modify things for him, he did better at school but not great.

"In the third grade I switched him to a smaller, private school and put him back a grade. We were still in and out of therapy. Then in the fourth grade, he hit a screamer of a teacher and it was a disaster. Finally, in the fifth grade when he was 11, we hit a psychiatrist who said, 'Has this kid ever been tested for learning disabilities?” They did a thorough evaluation and came up with ADD. It was such a relief."

Schram's son had exhibited classic symptoms of ADD since he was a toddler; he was a privileged child in an upper-middle-class community with an excellent school system; he has a well-educated mother; and his ordeal occurred in the mid-1980's, long after ADD and ADHD were recognized and became the most common child psychiatric disorders diagnosed.

So why was he misdiagnosed for so long?

"It doesn't surprise me," says Janice Stanley, an elementary school guidance counselor in the Marblehead Public Schools who has worked with many young ADD children in a number of different Boston-area communities. "Symptoms exhibited by classic ADD kids, the hyperactivity and the impulsiveness, often seem like simple behavioral problems to many teachers. And a lot of the time, these kids are quite bright and creative. We can, and do test for learning disabilities, but ADD may not show up in these tests. It's a very difficult diagnosis to make and strictly a medical diagnosis. Only a pediatrician or a qualified mental health specialist can make the diagnosis.

“Then there are the kids who don't fit the typical ADD profile, like the spacey little girl who can't seem to ever finish her homework. She never causes any trouble in school, so no one realizes anything is wrong. But in a few years she may be way behind and people think she's just not very bright.

"And pediatricians and psychologists can often miss the ADD diagnosis because, when these kids are brought to their office, the kid may seem fine that day. They seem fine because that's often part of the syndrome. When they are in a new environment or you are working with them one on one, they are often stimulated by that situation, caught up in the moment of it.

Once a diagnosis of ADD is made, the question of how to treat it arises.

The most controversial treatment is drugs. Whether to turn to drugs to help control the symptoms of ADD is, for most people, an agonizing decision.
In 1937 it was discovered that stimulants appeared to calm some hyperactive children. Although experts are not sure why this treatment works, they have prescribed stimulants like Ritalin, Dexedrine, and Cylert to treat hyperactive and ADD children with great success.

Most parents of children who take these drugs see dramatic, often immediate changes: Children who are hyperactive become calmer; those who were distracted easily are better able to concentrate.

However, in the 1980's, a storm erupted over the use of stimulant drugs to treat ADD children. The brunt of the criticism came from the Citizens Commission on Human Rights (CCHR), an organization established by the Church of Scientology, although members of the medical community have also voiced objections to the drugs. These criticisms and warnings, given heavy play in the media during the 1980's, scared many people away from drug treatment for ADD. Still, at least 750,000 U.S. children took stimulants to control hyperactivity and inattentiveness in 1987, and this figure may grow to more than a million by the early 1990's, according to an article in the October 21, 1988 Journal of the American Medical Association. It is extremely difficult to track the number of adults using such drugs.

Members of the Citizens Commission on Human Rights content that ADD is not a real disease or disorder, and they argue that almost any child would fit the criteria used to diagnose it. They are vehemently opposed to the use of mind-altering drugs and they claim that the drugs used to treat ADD are extremely dangerous. According to CCHR, the drugs have severe side effects like anxiety and depression, and they can cause high blood pressure, addiction, and overstimulation of the central nervous system as well as intensifying epilepsy.

The majority of the medical and psychiatric community disagrees with these charges. Dr. Larry Silver admits that "if ADHD is incorrectly diagnosed, then Ritalin may be over-prescribed...." But he says that stimulant medications such as Ritalin have been used and studied for more than 50 years and they have passed the test.
"Ritalin," he told an ADD conference last May, "is safe and effective. Parents should not let themselves be frightened by the Citizens Commission on Human Rights."
But despite repeated assurances by the medical and pharmaceutical establishment that these medications are safe, many parents remain nervous about putting their children on drugs.

"Of course I was worried about the drugs," recalls Barbara Schram. "There are those of us who remember the whole Thalidomide thing, the DES stuff. I keep my fingers crossed every day that 20 years from now they don't suddenly discover that Ritalin causes cancer or something. And I was worried about the idea of getting my son into a drug mode where he might later become addicted. I did a lot of research into the whole area. I don't think any parent does this lightly. It's not an easy issue.

"But what finally convinced me to try Ritalin was when I say the difference it made in a friend's son. He was so much more relaxed, so much better able to concentrate. So we tried it and it was like a miracle. That's not to say that the drugs are the only answer. These kids need structure, some of them need therapy, but for us, the Ritalin was the answer."

Now that her son is in his mid-teens, Schram reports, he has outgrown the hyperactivity and much of the disorganization associated with ADD. "I'd say that 50 percent of his symptoms are gone," she says. "He still takes Ritalin but only when he feels he needs it."

It is now estimated that in about half of all ADD children, the symptoms of the disorder disappears in adolescence - as happened with Schram's son. Others may lose the symptoms in early adulthood. It is believed that as the brain matures, in many cases, it is able to increase production of neurotransmitters.

Once the persistence of ADD beyond childhood was recognized (the Diagnostic Manual of the American Psychiatric Association has recognized ADD in adulthood since 1980) the same medications that had been prescribed for children were tried on adults. According to Dr. Joseph Beiderman, director of the Pediatric Psychopharmacology Clinic at Massachusetts General Hospital, medications are effective in about 70 percent of adults, which, he says is about the same effectiveness rate found in children.

Bob, who is among the adults who turned to medication, says "Ritalin helped me considerably. I found myself more focused, more organized and more alert. I was able to finally sit down and pay attention.

It helped socially too. I wasn't off on Cloud 9 anymore."

But, cautions Biederman, drugs aren't for everyone associated with ADD.

“I only prescribe them if the condition effects a person's life so that they are suffering or there is interference with everyday living. Some people can cope fine. They have learned to compensate and don't need the medication."

“I tried Ritalin for a while," says Dr. Robert Weaver, "and although I found myself working steadily, it regulated my life too much. I really didn't like it. I think I became a little too normal," he laughs.

Weaver recommended a multifaceted treatment plan. "Information is crucial. People have to understand the disorder. They need to know what it is they are dealing with."

He explains that some people, particularly those whose symptoms aren't very severe, can or already have found their own strategies for coping with ADD.
"In my case, my people really revolve around time management. I am fortunate that I have people around me who are able to help me out. We laugh. I say my secretary is like the frontal portion of my brain," Weaver chuckles.

Weaver suggests the people develop strategies to compensate for their disabilities. Those with serious organizational problems can learn to make lists. People with behavioral problems, like blurting things out impulsively, can learn behavior modification techniques, like cueing themselves to stop and think before they speak.
Examples abound of highly successful individuals afflicted with ADD who have managed to cope without resorting to drugs, including Thomas Edison, for governor and U.S. Sen. Huey Long, and Winston Churchill. "We are often extremely creative and bright," says Weaver.

Once parents, teachers, employers, or family members are educated about the condition, they can make small, simple adjustments that really can make a big difference. For instance, Judy Mitchell, a parent of an ADD child and coordinator of AD-In, a nationwide ADD information network, says little things, like giving children extra time on tests, writing out their homework assignments instead of expecting them to be able to copy it off the board, having two sets of schoolbooks - one for home and one for school - can be a tremendous help.

For families and individuals who suffer from social problems or poor self-esteem because of living with this disability, therapy may be advised. People who have long suffered from the stigma of their symptoms without knowing their cause lay in a medical condition, may need therapy to overcome the trauma and break their patterns of behavior. Over the past few decades, a number of different theories were developed about the role of diet with ADD. The most prominent has pointed to sugar as causing or at least intensifying ADD. Current research has pretty much debunked that theory although there is some evidence that a very small percentage of ADD sufferers, maybe one in 10, do have some intolerance to foods high in sugar content.

A recent controversial biochemical theory holds that people with ADD are affected by certain chemical compounds found in the environment. These compounds, it is believed, interfere with the brain's production of neurotransmitters.

Treatments recommend include: avoiding skin contact with items such as perfumes and colorants used in cosmetics and soaps; eliminating certain foods, like those containing preservatives or color enhancers; and taking precautions to avoid breathing in strongly scented household cleaning products.

In past, experts dismissed the notion that these chemicals played a role in ADD, but recently well-respected journals like Pediatrics and Lancet have conducted studies, the results of which indicated that ADHD children may be susceptible to chemical exposure. These articles have urged more research on the subject.
But perhaps the most important advancement for ADD sufferers and their families, is public recognition of the problem.
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"ADD has long been misunderstood," says Weaver. I don't think many people were aware of the impact these subtle symptoms had on victims and families, the self-esteem problems they cause, but now, in the Boston area anyway, pediatricians, mental health specialists, and educators have become more and more aware of ADD."

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