Making Progress, One Ex-Naysayer at a Time

 

Do you ever get discouraged about all the bad and inaccurate press about ADHD? That it is a condition that doesn’t exist? That individuals with ADHD—or their parents—are seeking the easy way out?  That is,  taking or giving to children “dangerous drugs”  for a made-up condition?

I just finished reading an article by Judith Warner, a columnist for The New York Times who planned to write a book on those themes. Yet, she kept putting off writing the book—and she finally realized why.

Here is what she had to say:

“For a long time, I thought that it wasn’t getting written because I was too busy or too lazy or too scatterbrained to write it. But then I realized that it wasn’t getting written because it simply couldn’t be written.

Its central argument was a tenable one in theory, but it crumbled in practice, when I ventured further than reading books and newspaper and magazine articles, and got beyond theory and started to talk to real people. To real parents who consistently told stories of how they’d painfully accepted labels and medications for their kids only after exhausting every other possible option, and to practitioners who often enough had themselves approached the whole issue of ‘flavor of the month’ diagnoses like attention-deficit hyperactivity disorder with skepticism, but had then come to see their validity – and the value of properly prescribed medication – from the weight of evidence they’d amassed in clinical practice.

“I became aware, over time, that there was a name for people like me within the community of parents and doctors whose lives were consumed with treating children with A.D.H.D. and other issues: ‘naysayers.’ I learned that we – the people who had no idea what it was like to parent a child with serious issues but found it easy to theorize and moralize and pontificate about the ‘abstract other’ – were just one more burden that these parents and their children had to contend with in their already overburdened lives.”

 

Second Thoughts, an op-ed column by Judith Warner, March 1, 2007.

 

For a long time, I thought that it wasn’t getting written because I was too busy or too lazy or too scatterbrained to write it. But then I realized that it wasn’t getting written because it simply couldn’t be written.

Its central argument was a tenable one in theory, but it crumbled in practice, when I ventured further than reading books and newspaper and magazine articles, and got beyond theory and started to talk to real people. To real parents who consistently told stories of how they’d painfully accepted labels and medications for their kids only after exhausting every other possible option, and to practitioners who often enough had themselves approached the whole issue of ‘flavor of the month’ diagnoses like attention-deficit hyperactivity disorder with skepticism, but had then come to see their validity – and the value of properly prescribed medication – from the weight of evidence they’d amassed in clinical practice.

“I became aware, over time, that there was a name for people like me within the community of parents and doctors whose lives were consumed with treating children with A.D.H.D. and other issues: ‘naysayers.’ I learned that we – the people who had no idea what it was like to parent a child with serious issues but found it easy to theorize and moralize and pontificate about the ‘abstract other’ – were just one more burden that these parents and their children had to contend with in their already overburdened lives.

More from Warner’s Archives

Gina adds:  In her column, Ms. Warner has offered clarity on several other mental health topics that affect children, including these:

“An Epidemic of Misunderstanding About Children’s Mental Health”

 

Complicating the question further, as Slate medical columnist Arthur Allen notes this week in an article on Grinker’s book, no systematic reporting of childhood mental illness was done until 1980, when the epoch-making diagnostic manual, the DSM-III, was published by the American Psychiatric Association. Attention-deficit hyperactivity disorder – the epidemic disorder of our era, did not exist as a diagnosis until the DSM-III gave it its original name, attention-deficit disorder.

That didn’t mean children never exhibited any of the behaviors associated with the disorder. (German psychiatrist Heinrich Hoffman’s 1844 poem, “Fidgety Phil,” is considered the first known description of a child with ADHD-type symptoms: “Let me see if Philip can/Be a little gentleman;/ Let me see if he is able/To sit still for once at table.”) And bipolar disorder, which seems poised to become the next out-of-nowhere epidemic, wasn’t believed to exist in children until very recently, and remains a highly controversial diagnosis.

You sometimes hear (if you spend a lot of time interviewing university-based psychologists and psychiatrists) that much of what’s behind the so-called epidemics of our time is a transparent play for research funding. That’s undoubtedly true. But as a means to a worthwhile end, I don’t find that terribly troublesome. What is problematic for me is when talk of epidemics starts to feed magical thinking. By which I mean: the tendency today among certain parents – and certain ideologues – to advance arguments that aren’t based upon reason and depart, potentially dangerously, from reality.

Children in the Mental Health Void

Remember the Nebraska law meant to keep desperate new mothers from abandoning their babies in dumpsters by offering them the possibility of legal drop-off points at “safe havens” like hospitals?

As was widely reported last year, the law neglected to set an age limit for dropped-off children, and eventually led to 36 children – mostly between the ages of 13 and 17 – being left with state authorities. Most of these children had serious mental health issues. Some were handed over to the state by relatives who had no other way of securing for them the heavy-duty psychiatric care they needed. Seven of the children came from out of state, including one who’d been driven 1,000 miles to Lincoln, Neb., from Smyrna, Ga.

Recently, The Omaha World-Herald acquired 10,000 pages of case files concerning these children from the state’s Department of Health and Human Services. They paint a portrait of desperation – of out-of-control kids, overtaxed parents and guardians, and an overstretched health care system – that really deserves more widespread national notice.

Their example also serves as a necessary corrective to the popular view that children being labeled mentally ill today are just spirited “Tom Sawyers” who don’t fit our society’s cookie-cutter norms, with parents who are desperate to drug them into conformity.

The children abandoned in Nebraska had big-deal problems. An 11-year-old boy, hearing voices since the third grade, had punched his fist through a glass door and smeared another child with his feces; other children had started fires, tortured pets, sexually abused younger children and made murder and suicide threats. Some of the adults charged with their care had problems, too, mental health issues that made them incapable of properly seeking help. Some parents and guardians had blocked earlier efforts by the state to provide care for their children, by not taking their children to Medicaid-funded therapy sessions or not picking up free psychiatric medications.

Tough  Choices for Tough Children

It was disturbing to read in The Times this week that the “atypical” antipsychotic Risperdal, a tranquilizing whopper of a drug with serious, sometimes deadly side effects, is now being widely prescribed to children with attention deficit hyperactivity disorder.

This despite the fact that Risperdal, which is used in children mostly to treat bipolar disorder, isn’t approved for A.D.H.D., and apparently doesn’t work for treating it at all.

So why, according to new Food and Drug Administration data on doctors’ prescribing practices, were 16 percent of the pediatric users of Risperdal over the past three years children with A.D.H.D.?

The simple answer is to point fingers at the drug companies, whose aggressive efforts to promote off-label use of this problematic new class of drugs have resulted in a spate of lawsuits, including one recently filed by the Arkansas attorney general that accuses Risperdal’s manufacturer, Johnson & Johnson, of having “engaged in a direct, illegal, nationwide program of promotion of the use of Risperdal for non-medically necessary uses” — like the treatment of A.D.H.D..

But I think the truth is more complicated than that. I think that what’s happening is that children with big problems are being given big, bad drugs because no one really knows what to do with them.

1 thought on “Making Progress, One Ex-Naysayer at a Time”

  1. Really appreciate your steady watch in the dark night when so many are completely asleep. From my office scene I can report that your efforts do not go unheeded. – Recently I told a patient she simply had to get your book, and for her marriage they needed to read it together.

    She knew she suffered from something that seemed to gum up the working, the administrative, the executive part of their relationship, but still struggled with the implicit taint and gossip mystery of ADHD.

    With your excellent intervention they are both on track, see the reality of mutual ‘bilateral’ prefrontal cortical confusion, and have found an entire new relationship.

    Well done, and thanks so much for this excellent piece.
    Chuck

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