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interview: harvey parker

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A child psychologist, Parker founded Children and Adults with ADD (CHADD), a nonprofit organization. He lobbies frequently on behalf of CHADD in Washington, D.C., and is now the president of ADD Warehouse, a company that sells ADHD materials.

FRONTLINE interviewed Parker on September 12, 2000.

. . . As a psychologist, the sort of knowledge that you have about mental illness has changed dramatically. There was very much a Freudian perspective. And now it's evolved to a biological way of looking at mental illness. Could you comment on that?

There's been a great deal of change in the field of psychology. Instead of looking at behavior as a result of unconscious derivatives of conflicts that one might have had, we look at behavior as more the result of current environment as well as a neurobiological basis of behavior. So there's been a much more objective look at how people suffer from different behavioral pathologies or clinical problems, and much more objective ways of treating these conditions among children, and adults as well.

Is ADHD solely a biological disorder? Does it have elements of bad parenting? What's going on?

I think there's a combination of causes for ADHD. It's really a neuropsychological or biosocial kind of phenomenon. Many children with ADHD come by it through genetics. In a large number of children, it's inherited, but certainly the environment plays an important role as well. Parenting certainly can improve the condition or cause more difficulties. But largely this is not the result of poor parenting; it's more the result of a combination of environmental and social, as well as genetic influences upon the child.

Could this possibly be a disorder that has risen because of the amount of social stresses that families are undergoing nowadays?

I think that the amount of stress in our social environment right now, with our fast-paced lifestyles and busy working parents, causes additional problems in child-rearing for a lot of families. It increases the likelihood that children are going to be under more stress and anxiety. But that by itself doesn't cause ADHD. That may aggravate a situation for a child who does have attentional problems and behavioral problems, because these children require a tremendous amount of care, attention and supervision, and oftentimes, parents don't have that time to give to them.

Those people who think ADHD is a fraudulent disorder . . . don't understand the suffering that parents feel, having a child who's affected by ADHD.There might be a lot of skepticism among the general public about this because they think, "Well, when I was a child, there were no ADHD patients in my classroom. So what has changed?"

I think there is a lot of skepticism about ADHD. It's one of the areas of psychology and psychiatry that we know a great deal about, yet it's one of the most controversial diagnoses in the area of mental health. ADHD children have been around for as long as there's been people. We've always seen people who were hyperactive, inattentive, or who had difficulty concentrating or organizing themselves.

But more so, we've paid attention to these behaviors and labeled them differently. Before we used to label them in some ways as "b-a-d" children having behavior problems. And now we see that it's really not under their control so much, and we see them more as children suffering from a neurobiological disorder of self-control and attention problems.

So there hasn't been a tremendous increase in the number of children with ADHD. It's not like it's in the water and you become infected by it. It's just that we've improved our sophistication in terms of diagnosis and recognition of this disorder, and there are more people looking out for these children now than there were in the past. . . .

You must see things very differently as a psychologist than the way a psychiatrist sees the issue. Is that so?

Psychology and psychiatry have melded together in the area of understanding and treating children with ADHD. In a way, we're very fortunate that ADHD is a condition that responds very clearly and very dramatically to medication. And psychiatrists are often the people who are the best able to prescribe these medications and treat these children And psychologists respect that very much.

By the same token, the research clearly shows that medication alone is not enough. And psychologists can offer behavioral strategies for parents to learn to manage their children; they can offer advice and consultation with schools to develop educational programs for these children; and they can help these children also to feel better about themselves in terms of counseling and understanding the causes of their behavior, and how to improve their quality of life. . . .

Let's talk a bit about the diagnosis of ADHD. The controversy often is pinpointed through the DSM and the criteria used to diagnose ADHD. Do you think the DSM has been hurtful, or helpful?

The Diagnostic and Statistical Manual of Mental Disorders, which is published by the American Psychiatric Association, has been very helpful in many ways in our understanding of ADHD and in objectifying, to some extent, the symptoms that children with ADHD should have to be classified as such. In the past, there weren't as many clear-cut diagnostic guidelines. . . .

However, that alone is not enough to be certain of a diagnosis. The diagnostic process should also involve various sources of information about the child--parents, teachers, self-reports from children, and adolescents or adults themselves. Sometimes psychological testing is used to determine whether any neuropsychological problems in learning or other emotional or behavioral difficulties as well.

A lot of critics say that inattentiveness cannot be equated to a mental illness like schizophrenia. I think that's why people have a hard time accepting it. We're all inattentive at some point. How would you answer that certain critique?

Inattentiveness alone is not lead directly to ADHD. Everybody has signs of inattention. When we're under stress, we become inattentive. When we're worried about something, we become inattentive. When we're depressed, we become inattentive. In fact, inattention is characteristic of everybody who suffers from any diagnosable mental disorder. Depression, anxiety disorders, learning disabilities, schizophrenia--all of those conditions have the characteristic of inattention. What differentiates the ADHD child, for example, from these other conditions is that the diagnosis is ruled out if the inattention is due to other factors, such as other mental illness or depression or anxiety. . . .

You can't look at the research data without realizing that there's a very strong likelihood that ADHD has a biological root. That it's something related to brain functioning. . . .Why not maintain those old standards, and just call it a personality trait or a behavioral difference?

It's important to diagnose a condition correctly, because diagnosis leads to appropriate treatment. So if we were to diagnose children or mislabel them as having an emotional disturbance, or just a personality disorder or personality trait--and not correctly diagnose that condition as ADHD--down the road, that might lead us to treatments that wouldn't be successful for these kids, first of all. Second of all, diagnoses often drive educational services in the United States. It wouldn't be appropriate to put a child who doesn't have, let's say, an emotional disorder or a learning disability in a program in school that isn't suited to help them. . . .

It sometimes scares parents very much to suddenly have a child labeled as a special needs child. There's a stigma to it.

It can scare parents a great deal. But parents need to understand that, sadly enough, labels do drive services. And most parents would rather get the services that their children need than be concerned about the labels. But if we're going to label a child, let's label the child appropriately. Ten or fifteen years ago, children with ADHD were labeled as emotionally disturbed. That was an offensive label for a lot of parents who knew that their children didn't have severe emotional problems. And so they're more comfortable with the ADHD label, and it's more appropriate, because it describes their child's behaviors and their child's problems. . . .

A lot of people insist that all of this is just a fraud, that this has been devised by a pharmaceutical industry and a psychiatric community that wants to make more money, and that simply wants to drive an industry. What do you say to that?

Those people who think ADHD is a fraudulent disorder, a disorder that was concocted to be self-serving to pharmaceutical industries or others, don't understand the suffering that parents feel with child who's affected by ADHD. They don't understand the outcomes that these children suffer themselves as they grow up.

This is the most well-researched psychiatric and psychological disorder today. There are thousands of studies on the ADHD children, which have been going on for decades. We clearly know that these children are at higher risk of school failure, dropout, emotional problems, depression, low self-esteem, substance abuse problems, and lower levels of career attainment. We know that the risks are severe for these children. It is a crime to undermine parents at the expense of one's own self-glory by making irrational and inappropriate statements that this is a fraudulent diagnosis. These people continue to do a major disservice to families and to adults affected by ADHD. This is a very serious problem, and it's about time we took it seriously. . . .

I listen to all this confusion out there. A lot of people say, "These kids are just brats. Nobody wants to teach them. They're lazy." How has that evolved? Before we saw these kids as brats, and now we have a label for them.

Well, there are kids without ADHD who are brats, and I'm sure there are kids with ADHD who exhibit bratty behavior. But we assume that bratty behavior is more short term, the result of being spoiled or overindulged, or not having appropriate limits set on your behavior. We know from our work with families of ADHD children that oftentimes, the parents who raise these kids are super parents. They're extraordinarily attentive, excellent at setting limits in terms of the behavior of their children, excellent at giving extraordinary supervision and working closely with their kids. And regardless of their strong positive efforts, their kids end up hyperactive, impulsive or inattentive.

Oftentimes, these kids are like that very early on, before brattiness could even develop in a child. And the other characteristic of ADHD is that it's chronic. It lasts a long time, these symptoms of inattention, hyperactivity, impulsivity. We think of brattiness as more short termed, attributed to a situation, not a long-term characteristic of a child's behavior or personality.

Some critics say that this emphasis on the biological causation of ADHD has actually transformed the meaning of the diagnosis. Before, you could say that it was behavior meeting criteria for a diagnosis. Now, actually, it means that you have a disorder. How would you respond to that criticism?

There are people who will just not be able to tolerate the fact that children should be given medication to treat a disorder, whether it's a behavioral disorder, such as ADHD, or whether it's an emotional disorder, such as anxiety or depression. And those critics will say anything to undermine the credibility of an ADHD diagnosis. But you can't look at the research data without realizing that there's a very strong likelihood that ADHD has a biological root, that it's something related to brain functioning, specifically executive functions in the brain that regulate our behavior. . . .

This is not about guilt. This is not about making parents feel better. . . . This is about making children who are suffering, better.And yet, there must be a lot of parents out there that are ready to sort of relieve their guilt, because they want to believe that there is a biological basis and they want a disorder; they want their kid labeled, yet their kid has nothing else, so that they can feel a kind of relief.

This is not about guilt. This is not about making parents feel better. This is not about finding a solution so parents can live a happier life or have an easier time. This is about kids. This is about making children better who are suffering. It has nothing to do with what's good for parents. It has only to do with what's good for the children.

We should be celebrating the fact that we found solutions for these kids. We should be celebrating the fact that there are medications out there that help them. We should be celebrating the fact that school districts across the country are beginning to understand and recognize kids with ADHD, and are finding ways of treating them. We should celebrate the fact that the general public doesn't look at ADHD kids as "b-a-d" kids, as brats, but as kids who have a problem that they can overcome.

You can't pay attention to critics and naysayers who would take our reasons for celebration, and turn them into just a trick that parents use not to feel guilty. That's hogwash. This isn't about parents. It isn't about guilt. It's about children, and helping them lead successful lives.

Let's talk a bit about CHADD, and how that was started. Perhaps you can give me an anecdote, because I have no idea how this all began. Who thought of CHADD, and how did it begin?

CHADD started in 1987 in southern Florida. It was the result of an effort by a couple of parents and myself to provide information to people in our community about ADHD. You see, at the time, there were thousands of research articles in scientific journals about attention deficit disorders. But parents were totally confused. School districts knew nothing about ADHD. And there were only maybe three or four books written about ADHD that were available to people.

So we got the idea of having a little support group meeting--an informational meeting, if you will--at a local private school, in Plantation. And we were surprised that over a hundred people showed up, and fit into a tiny little classroom to learn about ADHD. So we said, "Well, it seems like there's a need for this," and we decided to have a second meeting, in a hotel a month later. And 200 parents show up. Gradually, more and more people found out about these meetings, and we decided to write a little newsletter, and we gave a name to the organization. The name was Children and Adults with Attention Deficit Disorders, CHADD.

The newsletter began to spread throughout the community. Other people in other parts of the country received the newsletter, and wanted to form a chapter in their community. So through the hard efforts of a lot of volunteer parents, myself, and a lot of professionals, the name CHADD grew, and support groups began to develop in other communities across the country. Within a few years, CHADD developed over 600 chapters, manned by volunteer parents and professionals in communities across the country, to provide support and information about ADHD to members of that community.

It was amazing to see the passion that parents had to help other parents. Now, what fueled this growth was the fact that parents were so frustrated that their children weren't getting appropriate services in school. Back in 1987, when all this started, ADHD was not considered a disorder that would qualify for special education services. Nor were children with ADHD being given any accommodations or recognition in schools across the country. And parents were furious about this.

So they banded together. In those early days, some of us in CHADD went to Washington to meet with the Department of Education to explain the need for services for ADHD children. And, by and large, we were really astounded to see the reaction of senators, congressmen, and school officials, who began to slowly but surely embrace the idea that these children needed help. So legislation was passed; regulations were passed to allow children with ADHD to be recognized in schools across the country and to get the special help that they need. . . .

Schools complain that they're overwhelmed. ADHD is included within the IDEA and the Section 504, but the schools say that they don't have the resources to deal with this.

Schools complain, and teachers say they're overwhelmed. And they are. But putting a label on these children doesn't make their problems go away. Whether you call them ADHD or not, hyperactive kids are going to be hyperactive. Inattentive kids are going to be inattentive. . . .

Now, what does the label give you? The label gives you a method of treatment and services. The label gives you a way to help these children, gives you a path. The problems don't go away by not having a label. The problem was always there, whether you had the label or not. Now we have some possible solutions.

There is some controversy among schools, in that ADHD impacts kids differently in their learning. You have straight-A students that are ADD, and yet, when the grades drop from an A to a B, the parent expects accommodations to be made. And a lot of school people that I've been speaking to think this is just a little too much--that there are a lot of kids out there with very real needs, and if grades drop from an A to a B, just because a kid has ADD, parents are expecting too much.

A diagnosis can be abused. And in the case where diagnoses are applied improperly, too hastily, or just to get services or accommodations for a child in public school or in college or at university, is inappropriate. Diagnoses of this condition should only be made after a thorough, comprehensive assessment. Everybody has symptoms of inattention, hyperactivity and impulsivity from time to time. Diagnoses should only be given to those people who have these symptoms over long periods of time, and when their symptoms impair their functioning. Functioning isn't impaired if you go from an A to a B. Functioning isn't impaired if you have succeeded in school all your life, and then you need accommodations just to pass a certain test. You really should reserve that diagnosis for people who are seriously impaired in their ability to function as a result of inattention, hyperactivity or impulsivity.

I read somewhere that, in 1991, after the American Disabilities Act included ADHD within it, the number of kids diagnosed with ADHD soared. Do you think there's a correlation?

I don't think that the increase in prescribing medication to children with ADHD soared as a result of changes in the IDEA back in 1991. Remember, back in 1991, the only thing that the government did, basically, was say that ADHD is a condition that could qualify for services under other health impairments. CHADD celebrated that. The rest of the country basically ignored it. That wasn't what was driving the rising medication, because schools were still not proactively finding kids with ADHD.

In my opinion, several things caused the rise in the medication prescribing. Number one, parents understood from other parents that ADHD exists, and they had their kids evaluated. Doctors understood that medication was an appropriate treatment for ADHD, not a last-resort treatment, but in some cases, a first-resort treatment.

We realized that kids with ADHD don't have to stop taking medication when they become adolescents. We used to think that stimulant medication would stunt growth. We realize that that doesn't happen. So we continued prescribing medications to these children through adolescence.

We also realized that children could take medication more than once a day. They can take it in the morning, in the afternoon and evening, and even late in the afternoon when they come home from school to help with homework problems. And we also realized that adults could benefit if they have ADHD and they take medication. So all these factors combined to cause a rise in the prescription rates of medication today. . . .

Do you think there's a lot of misdiagnosis going on?

I think there is both under-diagnosis and over-diagnosis in certain groups, in certain populations, and in certain regions of the country. For example, in an age of managed care, where primary care physicians only have 15 or 20 minutes to see a patient and render a diagnosis, you're going to sometimes end up with people getting a label of ADHD and other diagnoses that may be non-mental health-related, when they shouldn't. . . .

Unfortunately, sometimes health care providers might write a prescription for Ritalin or Adderall or another stimulant medication, just as a test to see if the behavior improves. And if it does, viola: ADHD. But we can't use those medications to confirm a diagnosis, because most kids, even if their behavior was normal, would improve in terms of attention and behavior with these medications. So the diagnosis takes some time, and in our managed care system, time is something that doctors often don't have. So in some areas of the country, there can be over-diagnosis.

On the other hand, the diagnosis of ADHD is sometimes missed, because there's either a lack of awareness about ADHD, or a lack of time taken to properly make the diagnosis. For example, one out of six children in our country comes to a doctor's office with a diagnosable behavior or mental health disorder. Parents often don't report these symptoms to their primary care doctor, their pediatrician, or the family practitioner. Those doctors often don't have the tools. . .

Do you think there's consensus among your peers, etc., about how to diagnose and treat ADHD?

I think there's growing consensus among health care professionals about appropriate methods of diagnosis and treatment of ADHD. First of all, there is no mystery about diagnosing ADHD. It's a pretty straightforward diagnosis to make. It usually occurs pretty early, and it usually has clear-cut symptoms, and it's usually pretty easy to get informants reporting about those symptoms in children. So you don't have to be a magician to make a diagnosis about ADHD. It doesn't just vanish; it appears pretty directly in front of you, in your face, so to speak.

The methods of treatment are very clearly established. There are four areas of treatment. There's medication; there's parent education; there's educational intervention; and there's behavior therapy or behavior modification. Those are the four mainstays of treatment. And we know from the recent studies done that medication alone is not sufficient to treat these children--that a combination of medication, behavioral treatment, counseling, parent education and educational interventions provide the best results.

A lot of doctors say that, in this world of limited resources, a pill is good enough.

Is a pill good enough? No. A pill is not a skill. We need to teach appropriate skills--social skills, so they can get along with others; academic skills so they can read, write, spell, do math; as well as organizational skills, so that they can complete their work and have it done in a systematic way. Some children won't be able to learn these skills without those pills, because their brain won't be ready to accept that learning.

Those medications are pretty powerful. They are under the Schedule II label. Do you think that sort of warning is warranted?

One wonders whether these medications should be under Schedule II. There are some potential problems with abuse of stimulant medications. The concern about them being under Schedule II medications is that they are less accessible to parents, and there is some stigma attached with taking medications that are Schedule II, the more controlled substances. There has been a lot of controversy over this. It's probably best left alone at this point.

The main fact is, are children able to get these medications when they need them? And as long as they can get them at an affordable price when they need them, and the production of the medication is kept high enough to provide those people who need it with it, then I think we're okay. . . .

CHADD was criticized initially for accepting money from pharmaceutical companies.

CHADD took some criticism for accepting monies from pharmaceutical companies to support its programs. Keep in mind that the amount of monies taken was a very small percentage of CHADD's overall budget. The vast majority of funds in CHADD's budget comes from membership itself, and very little comes from pharmaceutical grants. However, the cynics who call ADHD a myth, who are skeptical about ADHD, used the fact that CHADD did accept from pharmaceuticals as a whip against CHADD, to say, "See, they're just in bed with the pharmaceuticals to promote the use of medications."

Well, CHADD doesn't do that. CHADD endorses a multi-modal approach to treatment--medication, education, behavior management, interventions in schools. We don't say one should be used without the others.

Do you think that CHADD embraces ADHD as a biological disorder?

I think CHADD embraces what science says about ADHD. The professional advisory board, which has some of the most esteemed scientists in the ADHD area on it, tells us that there is a good deal of research about the neurobiological factors that can cause ADHD, about the inheritability of ADHD. And they lead us in the direction that we need to go. So we're going to go with science, not with sensationalism.

Has CHADD made an active effort to distance themselves from pharmaceutical companies after that sort of initial criticism?

I don't think CHADD has ever done anything wrong with respect to taking funds and getting grants from pharmaceutical companies. We're not unlike any other nonprofit organization that advocates for an illness. We submit grants, and we get money to fulfill those grants in support of our mission. And I don't think there's any problem associated with that.

Yet some critics would insist that any research that is paid for by pharmaceutical companies compromises that research.

For those people who criticize CHADD for taking money from pharmaceuticals, I'd like them to show us how we are compromised--show us how the money we've taken from pharmaceuticals influences our mission, question our specific day-to-day activities. If anything, the money that we've gotten from pharmaceutical grants allows us to expand our resources.

For example, you can be a parent and call CHADD at any time during the day and you'll get our hotline and get information about ADHD. You can be a teacher and read Attention Magazine, which is published six times a year from CHADD, and get up-to-date information about ADHD. You can be anybody and go onto our web site, chadd.org, at any time, 24 hours a day, 7 days a week, and get the best articles about ADHD. And you can find out where there's a chapter meeting that month in your hometown that you can go to, where you can speak to other parents and teachers who are working with ADHD children. We couldn't do this without help. That's where pharmaceutical grants come in. . . .

So those people who criticize us for taking that money . . . let's say to them, "You know, you're right. Let's cut out the CHADD website. Let's stop the world-class conferences, let's not have Attention Magazine anymore where we give information. And you know what? That call center we have that services parents and teachers and children and healthcare professionals--let's not have that anymore." Are we better off doing that, or are we better off taking funds, as every other organization does, and using them for the right purposes? Where is the good being served?

Do you understand what the controversy is about?

I understand that it goes back to one simple thing: a lot of people aren't ready to give medicine to children. That's the root. We wouldn't have this if we weren't giving medicine to children. But as a society, we have to accept a fact. ADHD is largely, for many kids, a brain-based disorder. If we're going to fix it, we need medication to do that. As long as we don't accept that, and as long as people are out there thinking that we're abusing children by giving them medication, then they're going to resent pharmaceutical companies providing support to an organization like CHADD.

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