10 a.m. Tuesday, August 27, 2002

The National Press Club, Washington, D.C.

Transcript by: Federal News Service, Washington , D.C.

LINDA GOLODNER:  Good morning.  I’m Linda Golodner.  I’m president of the National Consumers League, and I’m joined today by Ellen Kingsley, the mother of a child with AD/HD and editor-in-chief of Attitude Magazine; and Christopher Knight, who played Peter on the Brady Bunch.  Chris has Attention Deficit Hyperactivity Disorder, AD/HD.  Each of us will make a short presentation and then we will answer your questions.

AD/HD is one of the most common chronic childhood disorders.  Current estimates indicate that four to 12 percent of all school-aged children may be affected.  AD/HD is misunderstood by parents, misunderstood by teachers and misunderstood by the community.  It is for this reason that the National Consumers League, together with Attitude Magazine, are working together to better inform the public so that young people and adults who have AD/HD can be diagnosed and treated.  Too many people are misinformed, embarrassed and don’t seek help.

This national outreach began with our coming up with fundamental principles about AD/HD that we’re asking national and state organizations to support.  We already have 30 organizations who’ve joined us.  The principles are quite simple: identifying concerns of health professionals and child advocates, those who feel that the thousands of children and adults in this country should get the healthcare they need and lead productive lives.  Left untreated a child will struggle to keep up in class, just because they can’t pay attention, they’re disruptive and often lonely and confused, even at home.  Adults sufferers may have trouble holding down a job and maintaining relationships.

To help our efforts we want to educate the public about some information that we found out from a national poll.  We wanted to determine the attitudes and perceptions of the public about AD/HD.  What are the myths?  What are the realities?  We found that four out of five people actually have heard something about the disorder and some recognize it as some sort of chemistry-in-the-brain disorder.  But about a third of the people don’t know what causes AD/HD.  Some blame it on parents.  They say parents with AD/HD children spend too little time with their kids.  They also blame it on everything from pollution to food allergies to too much sugar and too much TV.  Only a third think that the cause is a chemical imbalance. 

The most useful finding for us, however, was that the public just does not know how it should be treated.  They recognize that parents should spend more time with their children but they also think that playing video games and eating less sugar may be the answer.  The combination of answers: teamwork, psychological counseling, parental involvement and teachers’ time were considered good ways to treat AD/HD. 

The real answer is that all of the above are important, starting with the help of a health professional.  Most of the respondents feel that medications are effective some of the time.  Others just don’t know.

We also wanted to find out if the public knows what can happen if AD/HD is not treated.  Most knew that if one falls behind in school and has difficulty in personal relationships that that is something that happens to young people if they’re not treated, but only half identified other consequences, such as abusive drugs or alcohol and getting in trouble with the law. 

AD/HD is a serious disorder.  It should be diagnosed by a health professional and treated serious disorder.

Let me introduce my colleagues.  Ellen Kingsley, an Emmy-winning journalist and founder of AD/HD Attitude Magazine, is a passionate consumer advocate.  And we’re pleased to have her here today.  Ellen.

ELLEN KINGSLEY:  As the mother of an AD/HD child I know the struggles that parents and children face in overcoming this disorder.  It can be done but not completely and it isn’t easy.  I had to sift through piles of bad information before I could get my son, T.K., the treatment he needed to get better.  I read what appeared to be scientific information that AD/HD didn’t exist, that it was a made-up disorder designed to make money for drug companies and doctors.  I read, too, that the medicines were dangerous and that I ran the risk of turning my child into a zombie or an addict should I decide to let him try them.  Besides, who wants to give a five-year old a psycho-active medication?

It took a lot of convincing, a lot of education and a lot of reading and then many months of watching my child suffer, unable to learn, unable to socialize normally, but able to make himself understood before I finally decide that it was worth it to give it a shot.  So we decided on a multimodal treatment of medication, psycho therapy, education therapy and, in his case, language therapy. 

Today I’m happy to report that T.K. is a healthy, active 15-year old, who was the first camper at his sleep-away camp to ever teach a course, fencing.  I actually gave an AD/HD kid a sword.  While still in a special needs to school and still requiring medication to help control his symptoms, he is getting solid grades and he feels confident and secure.  The same cannot be said for most children in America with AD/HD.  Every time he sees one of these reports about AD/HD not existing and medication being a bad thing, he gets furious.  He can’t understand why people would talk that way about treatments that have helped him so much with a disorder that once left him virtually disabled.

The fiction T.K. describes is everywhere, much of it from self-styled AD/HD experts whose wild claims contradict the nation’s leading doctors and stigmatize AD/HD sufferers.  As a matter of fact, one of our readers wrote to us that a teacher told her that her son’s AD/HD did not exist and the teacher wanted the son to take a vitamin, which the teacher happened to sell.

Anyway, that’s why my organization, the Attitude Foundation and Attitude Magazine, is working with the National Consumers League to arm patients with the facts.  We are waging the AD/HD campaign to inform the nation on several fronts.  Christopher Knight has recorded public service announcements that will be broadcast on radio stations around the country.

A powerful weapon in the fight against misinformation is the AD/HD principles, which represents the knowledge and passion of dozens of health experts and children’s advocates who are outraged by unscientific AD/HD theories and snake oil remedies.  Signatories include leading AD/HD researchers from Harvard and Columbia Universities , the Children’s Defense Fund and the American Academy of Child and Adolescent Psychiatry. 

The AD/HD principles put the facts about AD/HD and the rights and responsibilities of people who have the condition in one place in plain English.  You can find the AD/HD principles on the National Consumers League website at www.nclnet.org.  Think of the AD/HD principles as a desktop reference on the facts about AD/HD.  The site links to many other AD/HD resources, including Attitude Magazine, on the web that are trustworthy.  This will be a trustworthy gateway to the world of AD/HD.

When I left my home in Texas to do this news conference, T.K. gave me an assignment.  He said to tell everyone that AD/HD is real and that it is painful and difficult to live with.  He says that anyone who doesn’t think that AD/HD exists should spend a day in his shoes, working twice as hard in school to achievement half as much, only to be told that his condition is a code word for laziness and poor study habits and bad parenting.  In fact, one of the reasons that he’s not here today is that I have forbidden him to do any media because the last time he did a magazine interview, they ran a picture of him and the caption was, “On Drugs” – “T.K. on drugs.”  Can you imagine how humiliated a 14-year old boy would be to have his teachers and friends and relatives read that?

Parents who fight the fight on behalf of their AD/HD children are my heroes and so is Christopher Knight, one of the few well-known Americans willing to speak publicly about his own AD/HD for the benefit of others.  Now let’s hear from Chris.

CHRISTOPHER KNIGHT:  Thank you, Ellen.  I’m here today because I don’t want others to have to suffer through their childhoods and into their adulthood as I did because their ADD or AD/HD goes undiagnosed or untreated.  I’ve grown up battling ADD.  My real life was like Peter’s, the character I played on the “Brady Bunch.”  We were both twitching, quirky, energetic pleasers given to schemes and daydreams; both good kids trying to do the right thing.  In watching Peter, you’re watching me struggle with my ADD. 

I always felt a little different while growing up.  I was aware from a very early age that I was an intuitively bright kid and I was even told that I had a very high IQ.  But from the onset of school I remember an anxiousness that I wasn’t in complete control.  At a very early age I had developed a fear of my own distractibility.  And into adulthood I carried a deep feeling I was operating as if the brakes were on.

My first recollection of this distractibility came from the demands of reading and writing.  For me reading was humiliatingly difficult and writing fairly impossible.  I know nothing of what I read, save for the few sentences before my mind drifted off.  Nothing seemed to make reading and writing manageable or predictable.  Pure endless plotting was all that worked.  I learned to dislike reading and writing as a result and distrust myself whenever they were required. 

What I lacked in focus, I compensated for in sheer determined will.  I developed this state of focus, where most of my available energy was spent just concentrating and what was left over was available for the task at hand -- the creativity, the inspiration, the engagement.  Not at all optimal but it did work for a time.  I lived this way during my years as Peter, expending energy, focusing, while in front of the camera and when the cameras were off I played the part of a normal kid.  In fact, I played the part so well that my parents had no idea that I had a problem.  And as a young adult I was about to discover just how big a problem I was going to have as an adult.

I’d always expected to go to college.  The original run of the “Brady Bunch” had ended and I graduated from high school, then I enrolled at UCLA.  It didn’t take long before I was drowning in distractions and overwhelmed with course load.  The techniques I had used to get by as a child and an adolescent were no longer going to be workable.  I left college and with it, a less secure sense of self.  I suspected I was either lazy or spoiled and I never thought to ask for help.

Over the years I battled anger and frustration and ultimately depression from trying to find a way to live up to my potential.  Five years ago I finally was diagnosed with ADD, the form of disorder that doesn’t include hyperactivity.  My treatment includes medication and therapy.  People sometimes ask me whether it’s a good thing to take medication for AD/HD.  From my experience, yes.  Similar to any parent whose child suffers from a vision disorder, wouldn’t they want to provide glasses?  Medication for AD/HD is no different in my mind.

Getting diagnosed and treated has made all the difference in my life.  In my case it has taken those brakes off.  I no longer spend an overwhelming amount of mental energy just to be present.  I’m able to accomplish tasks more to my satisfaction, more to my expectation.  I am simply just living more up to my potential.  I have found the tools to live a normal, productive, satisfying life and I want to share what I have learned with those out there struggling with ADD.  That is why I’m volunteering my time for this important cause.  No one should have to go undiagnosed as I did.  Thank you.

GOLODNER:  Thank you.  Are there any questions?  Yes.

Q:  Okay, this is probably a personal question but if you say that you were diagnosed five years, how long will that be that you had ADD?

KNIGHT:  I’m not a doctor.  I suspect I had it from the very beginning so I’m 44 now so that’s my entire life. 

Q:  (Off mike.)

KNIGHT:  Yes, but discovering it as an adult provided a very interesting retrospective on what I had been going through as a child.  It would have been useful to know it then, more useful than knowing it as an adult but it certainly helps now moving forward.

Q:  Can I do a follow up?  Also, can you go back – I know you are already talked about this but can you explain again how you’re life as Christopher – (unintelligible) – Peter and vice versa.

KNIGHT:  You know, spending that time as an adolescent in front of the camera, I, too, have documentation on sort of the quirks that were me.  I mean, that was me really in front of the camera.  And I’ve always found it very difficult to watch myself.  There’s a twitching and I can remember the time staying in front of the camera, just being nailed down with kind of single focus that I had to maintain.  It was very difficult and the energy is just kind of like twitching out of my body.  You know I look back on it and think that if more people knew at that time about ADD that I could have easily been diagnosed back then.

Q:  What do you think about the critics and what the critics say and the skepticism that some have about whether this is really a disease?

KNIGHT:  I wonder where they’re getting their information.  I mean, this is definitely a condition that is recognized by the American Medical Association.  It’s recognized by the American Academy of Pediatrics, the American Academy –

Q:  Child Adolescent Psychiatry.

KNIGHT:  And it goes on and on.  So I’m not certain what organizations have documented proof that this is really some imagination.  Believe me, I was one of those.  I mean, I never thought that – growing up that this was something – I thought I was lazy or just, again, spoiled.  But just something wasn’t right.  I mean, I knew I was bright but I wasn’t able to get course load through with whatever I was dealing with.  And I can tell you now after taking medication everything becomes much easier.  I don’t spend – I feel like I’m spinning wheels – or I felt like I was spinning wheels and I don’t feel like I’m spinning anymore.

GOLODNER:  Any other questions?  Yes.  This one back there.

Q:  You were talking about how hard it was to concentrate growing up so did that make it extremely difficult memorizing lines?  Do you have any personal stories growing up?

KNIGHT:  Well, reading was so difficult.  Reading the script was difficult.  At a very early age there was no reading of the script and no reading of the lines to memorize the lines.  The lines were read to me and that has always been quite a bit different.  I was always very good in school if listening to a lecture – I could almost memorize the lecture but if I had to read it out of a book, there was no lecture or there was no learning.  The concentration -- I sort of found a place very early that I need to be, which was to monitor myself, to really kind of single focus and ignore anything around me, which sort of worked but it sort of made for difficult socialization because to work in that capacity, you’re really not taking anything from the outside and dealing with it.  But that was my way of making certain that I got the words out.  That is a hyperfocus. 

GOLODNER:  Yes, one more question.

Q:  You said that you had the script read to you.  Was that – did the other stars of the show get the same procedure done?  I mean –

KNIGHT:  Well, I don’t know.  This was by my mom or my dad, my parents the night before to have a familiarity with what was going to be required the following day.  We also had dialogue coaches so there was an opportunity to play it back and forth a number of times and through that repetition it would sort of stick.  Again, the focus required – remember when the line came and so forth – required me to actually – I see myself not blink – watch scenes.  I’m not blinking.  I’m just standing there.  I’m standing forward.  I’m twitching.  I’m afraid of moving for fear if I moved I’d forget where I was.  Sort of a distortion – (laughs) – that is gladly behind me.

KINGSLEY:  Also what I think you’re seeing with Chris was the type of one-on-one learning that we know does work for AD/HD kids because it’s the kind of teaching that enables kids to better pay attention.  And the problem in today’s schools is that an AD/HD kid is shoved into a classroom with 25 or 30 other students and the teacher is exhausted and can’t give that child the one-one attention that they need to learn properly.  And that’s one of the reasons I’ve had to send my child to private school where there are no more than five children in a class.  And so I think that inadvertently was of great benefit to you because you actually had tutoring throughout your early childhood.

KNIGHT:  I don’t think I would have made it -- I’m curious -- if I didn’t have the show and that environment, which was very special and also very novel.  Another one of our issues as a sufferer of ADD, every day was different and that worked to help me maintain in that environment.  Also schooling, when we had schooling on the set it was bursts of schooling – 45 minutes, an hour here – and then it would break.  A lot of attention.  A lot of one-on-one.  It all kind of masked my problem and that’s why I sort of discovered it as soon as the show was off and then I was on my own. 

I was on my own to try to figure out now how to get through and I obviously didn’t have the tools at that point.  So my life has been learning the tools to be productive and being frustrated because I know I have a lot more to give.  It’s a tough thing when you’re focus is just drifting in and out and you can’t predict who’s going to show up or when.  And some days are good, most days aren’t.  So it becomes unsettling to say the least.

Q:  Ellen, you talked about one-on-one schooling helping the kids a lot.  Doesn’t the medication help a child with this disorder focusing in a classroom of 25 kids or no?

KINGSLEY:  Well, first of all, it depends on the severity of the illness.  I have a child who has very severe AD/HD and while the medication helps a lot, it doesn’t take away all the symptoms.  It only lessens them and gets the child to the point where they may be able to do a better job.  The other thing, though, that you have to understand is that most AD/HD kids also have a learning disability – a reading disability, a language disability, where they can’t understand or fully comprehend oral language.  They have problems with disorganization.  These are things that the medicine can’t touch and that’s why they also need psychotherapy and they need special education or special accommodations in the classroom.  My child will go to school and orally will be given a list of assignments and will write them down and think he’s gotten them right, and then the next day will turn in all the wrong assignments because he misunderstood what the teacher was saying and that’s because his accompanying language disorder, which maybe half of AD/HD kids have, prevents him even with medication, from understanding oral directions.

Q:  What percentage of schools in the country recognize this as being something that needs special care?

KINGSLEY:  I think it really goes teacher to teacher.  Schools by law are supposed to not only recognize it but they’re supposed to provide accommodations for kids who have special needs, like AD/HD kids.  But all to often we find that most schools and most states are out of compliance with the federal law, the Individuals with Disabilities in Education Act, that requires that they provide special services to these kids.  And all too often we find that parents have to sue the school district in order to get their rights under federal law to a special education for their child.

GOLODNER:  Any other questions?  Yes.

Q:  What kind of doctor is best equipped to make a diagnosis of something like this?

KINGSLEY:  I would say your first choice would be a certified – board certified child and adolescent psychiatrist who sees a lot of this stuff and that should be for the diagnosis.  Unfortunately there’s a great shortage of child and adolescent psychiatrists in the United States and if you try to make an appointment with one it may be weeks or even months before you can do that.  My second choice would be a general practice psychiatrist, who at least is up to date on treatments for the disorder.  Third, then, I would go to my family practitioner as an adult or a pediatrician.  You know, I have a little bit less confidence in those modes of diagnosis because the diagnosis of AD/HD is not that simple.  My son was diagnosed over a period of three weeks, including getting input from his teachers, input from both of his parents, neuropsychiatric testing, you know, things like that.  And these are things that maybe a pediatrician isn’t so likely to do because they just don’t have the time or the training.

You know, so often you hear – you walk into a doctor’s office and you walk out with a prescription for Ritalin and that has not exactly been the case -- or should not be the case.  It should take place over a period of time with different modalities used, including the teachers’ input, the parents’ input, the doctor’s observations and the results of tests. 

MS. GOLODNER:  Any other questions?  Thank you very much.

(END)