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. . . 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.
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. . . .
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. . . .
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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