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KOK Edit: your favorite copyeditor since 1984(SM) KOK Edit: your favorite copyeditor since 1984(SM) Katharine O'Moore Klopf

Wednesday, August 08, 2007

AD/HD Is Real, and Those Who Have It Aren't Dangerous

For those who doubt that there's such a thing as attention-deficit/hyperactivity disorder (AD/HD, formerly called ADD), two studies showing that it is real have been reported on in the August issue of the General Archives of Psychiatry: here (full article, available at no charge) and here (only the abstract is available at no charge). And here’s an article for the general public that explains the studies' findings in plain English.

[sarcasm]Golly gee! I guess I haven’t been imagining all these years that my father-in-law, husband, and one of my sons has AD/HD![/sarcasm] Those of us who live in the AD/HD world still have some way to go, in convincing others (1) that it’s a real neurological disorder that needs treatment and (2) that people who have it aren’t any more likely than non-AD/HDers to be dangerous to others.

Practicing psychologist Betsy Davenport of Portland, Oregon, has AD/HD, as does her 15-year-old daughter. She was appalled to find out about the April 2007 response by syndicated columnist Dr. Joyce Brothers to someone who asked about the existence of AD/HD in adults. I posted my letter to Dr. Brothers a while back. With Dr. Davenport’s permission, I now present her letter to Dr. Brothers:
Dear Dr. Brothers:

Regarding your [response to “D.D.” in one of your April 2007 columns, in which you wrote that AD/HD is for people who are
“... a bit of a hypochondriac,” that its symptoms are “so vague and widespread that just about anyone could decide that he or she is suffering from its effects,” and that some adults who think they have AD/HD may just want to “decide to muddle through,” without diagnosis, therapy, and medication]:

I must take issue with practically everything you say about AD/HD. First, let me register my shock that you are so ill-informed and that you pass along incorrect information to your entire readership. Surely you have a copy of DSM-IV handy? Surely your reading is not so narrow in scope that you have missed this: AD/HD is more heritable than everything except height. Among adults, fully 80% remain undiagnosed. Undiagnosed/untreated AD/HD is a significant risk factor for drug abuse, driving accidents, emergency room visits, teenage pregnancy, and a host of other awful consequences.

Those labels given out when you were a child—those are moralistic and pejorative. It is considered an improvement when we modernize and give a medical condition a medical name. Those old-fashioned ones don’t really point the way to how a person might go about improving their life. That is what treatment is for. People want to be more effective. Muddling through is a poor substitute for real effectiveness, don’t you agree?

It is kind of you to let people know they have choices, but you forgot the part about how to make an informed choice. You have to try both. Like ice cream. Let’s see, vanilla? Or chocolate? Gee, I don’t know. I never tasted vanilla. Does this make sense to you now? An informed choice about treatment for AD/HD comes after a person has had an opportunity to experience the altered cognitive and self-regulatory functions afforded by medications prescribed and taken properly.

Oh, also, could you point me to where you got your information about how people with AD/HD were “functioning OK” until doctors began telling them otherwise? If that’s so, a lot of doctors are in a world of trouble for it. I must tell you, though, [that] in my experience, there are an awful lot of doctors—and psychologists too, which is worrisome—who really don’t know very much about it. So if you have more accurate sources, I’d really like to know about them.

As for a definitive “test” for AD/HD, I wonder if it’s all right with you if, as with depression and anxiety, we let experienced clinicians diagnose AD/HD on the basis of a patient’s history, presenting problems, clinical observations and their own good judgment.

AD/HD is a neurological condition; you know, in the brain—the operating system for everything else. It is a real drag if you have it. Nobody wants to have it. It interferes with every area of a person’s life: academic, social, recreational, marital, vocational—did I miss anything? Oh, it’s often misunderstood, which means a lot of people think you’re faking it (like hypochondria) or using it as an excuse. Others think you just don’t care about doing well or being on time or knowing where your keys are or [remembering] your husband’s birthday.

That sounds like muddling through, and I’m not one to just say, [like you did], “What the heck.” The world is in desperate need of all the effective human beings we can muster. I’m sorry you think [that] it’s good enough to just muddle through. That is so disheartening.

Thank you for your attention to this important subject.

Dr. Davenport shared her letter with me after we both posted comments on Judith Warner’s August 4 Domestic Disturbances column, “The Columbine Syndrome,” in which Ms. Warner discussed the legal defense of a 26-year-old Connecticut man accused of sexual assault and murder. The man’s lawyer, pleading for leniency for his client, told the judge that the man had suffered from AD/HD, dyslexia, and dysgraphia as a child. In doing so, the lawyer fed the misperception that people with AD/HD are dangerous, capable of committing atrocious acts against others.

Disinformation is not what people with AD/HD need. They need to be allowed to be who they are. They need compassion. They need training and therapy and often medication. They need educational assistance. They need to have their talents recognized. They do not need to be unjustly demonized.

My 12-year-old son is not dangerous. He is kind, gentle, sweet, and quite creative, scientifically speaking.

My husband is not dangerous. He is kind, gentle, and sweet. He is a wonderful husband and parent. He is a talented cabinetmaker.

My father-in-law is not dangerous. He’s a little gruff, but that’s because all his life, no one ever offered to help him understand all the subtleties of social interactions. No one ever tried to accommodate his educational needs. As a child, he was called stupid and crazy. He’s neither stupid nor crazy, just different. He’s a terrific jazz and blues pianist and singer.

As Dr. Davenport commented about Ms. Warner’s column:
AD/HD is not a mental illness—it’s a bioneurological condition with its origins deep within the brain, having to do with structural differences and chemical differences. When we see undesirable behavior, we are seeing the expression in the external world of the disorganization of the internal, self-regulatory world. ...

AD/HD has always been diagnosed—with a moralistic label. We have finally got it more or less right: a medical diagnostic label and appropriate medical treatment are much preferable to the former.

It is the rare person who uses their AD/HD as an “excuse.” We are still responsible for our behavior, even though a fair amount of it wasn’t what we intended, wished for, or could help. ...

By and large, people with AD/HD are no more lawless than the rest of you, save reckless driving and drug problems. But they are not alone in that.

Another study reveals that among adults diagnosed and treated in adulthood with medications, a whopping 90% wish they had been diagnosed and given medication as children. At our house, we kiss the bottles of medication every morning and are grateful to live in a time when the kinds of help we so badly need are available to us. Others, without adequate health care, are not so lucky. They remain erratic, have poor job histories, marital and social problems, and an enduring sense of failure.

How much better it could be if all of us could be rendered more effective in our lives. We could even make contributions to the wider society and do our part for the common good.

I defy anyone who takes the moral high ground on something about which they have not troubled themselves to learn. AD/HD is a profoundly troubling and debilitating condition. Most people have no idea how domestic life is for us. Even with my advanced degree, personal experience, and early diagnosis for my daughter, careful treatment (with drugs—safer by far than aspirin, which kills many every year, which the stimulants do not), we live a herky-jerky life because the only really predictable thing here is unpredictability.

We are fully capable of love, commitment, perseverance, and prosocial behavior. ...

Get the facts, people, before you make assumptions or fall for myths.



LeftLeaningLady said...

My stepson has AD/HD and he is a handful. He is on Adderall and Zoloft, but he is still constantly in trouble at school. (Only at school). I think couselling is the answer, but I get no back up from his mother or father. I worry because he is going to be 13... oh, he IS 13 today and I am worried about his future. Is Neil in special classes or does his medication make him able to focus enough to get his work done?

This child has been through almost every elementary school in the county and has spent the last 2 years at military school.

Actually I did a post on him here.
http://leftleaninglady-mymusings.blogspot.com/2007/05/is-it-possible-to-save-this-child-or.html I really don't know where to turn and I don't have any rights to make decisions.

Katharine O'Moore-Klopf said...

My son Neil has a combination of strategies that are working quite well for him:

1. He takes Metadate-CD (a timed-release version of Ritalin) to help him focus most of the day, and then methylphenidate (generic Ritalin) for the late afternoon–early evening hours.

2. He sees a private therapist periodically for medication management and check-ins.

3. He has a very thorough IEP (individualized education plan) with our school district, which provides for (a) going to school in small classes (6 to 8 students), (b) educational accommodations (more time for taking tests, etc.), (c) individual counseling at school a couple of times a week, and (d) social skills group counseling at school at least once a week.

4. He has a family who has become quite knowledgeable about AD/HD and coping skills for dealing with it.

5. He has parents who have very clear expectations for his behavior and who use behavioral modification to change inappropriate behaviors.

6. He has a father and a paternal grandfather who have AD/HD; he can compare notes about living with AD/HD with them.

7. He has a mother who is very open with the world about AD/HD and is an extremely determined advocate for those of her family members who have it.

It's very frustrating to know and love a child who has AD/HD and needs more help than he's getting. My heart goes out to your stepson and you, LLL. It takes more than just medication to make a difference.

Katharine O'Moore-Klopf said...

You can read information about IEPs and how to go about getting them here and here, for starters.

For your stepson to qualify for an IEP, one of his parents must request, in writing, that his school district do a full evaluation of him regarding his AD/HD. (It helps to show the district a written diagnosis from the child's physician.) The district's committee on special education (or committee with a similar name) will handle this. The committee must declare the child "other health impaired" if it does indeed find he has enough problems related to AD/HD to qualify him for educational assistance.

Federal law entitles every child with the proper diagnosis to an IEP. But private schools, unless they accept federal funding, are not covered by this law (Individuals with Disabilities Act, or IDEA).

Jacki said...

We've tried just about everything for ADHD. We've been doing diet therapy for 6 months. We actually saw changes. (Surprise, surprise!) The book is called "ADHD Alternative Diets” from http://www.naturalADHDcure.com
I thought you might appreciate it editormom.

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