460605_low CROP

Pt. I: The Truth Behind 10,000 Toddlers” Report

Bookmark and Share

 

A Facebook friend writes to me, below, after the latest “click bait” from The New York Times’ Alan Schwarz ran on Sunday. The story is called “Thousands of Toddlers are Medicated for A.D.H.D., Report Finds, Raising Worries.” Sorry, I won’t share the link; why encourage them?

A friend who read the story writes:

Wait…TODDLERS? That blows my mind. How could anyone even diagnose a toddler with ADHD? I took our 2-year-old to a story time thing at the library where the toddlers were expected — no lie — to sit nicely in one place and listen to songs and stories for over 30 minutes. I managed to get him to do this somehow, but he had a total meltdown afterward, at which point I carried him home apologizing for not knowing what we were in for and subjecting him to such a developmentally inappropriate activity. He absolutely cannot sit still and be inattentive for any length of time, but my armchair diagnosis for that is “being a toddler.” And that’s with the knowledge that he has two ADHD parents.

Here is my response:

Yes, if a toddler were diagnosed and treated on that basis, that would be very wrong. It’s a very complex issue, but we cannot view ADHD solely through the reductionist lens of behavior. Nor can we assume we know the facts from reading Alan Schwarz’s reporting. Much was missing in that article.

As for treating young children for ADHD, think about it: At its core, ADHD is about problematic dopamine transmission (an oversimplified explanation, but it will have to do for now). That might most obviously manifest in “behavior problems,” but is not limited to that, especially in the more severe presentations and with co-existing conditions.

Dopamine affects many important physiological processes, including those related to respiratory and cardiovascular function (ADHD is associated with higher rates of  enuresis and encopresis, asthma and allergies, and arrthymia), in addition to being the “reward” neurotransmitter that also controls motivation, movement, and emotional regulation.

My friend has ADHD. So does her husband. She knows the benefits of medication. But when it comes to children, she has a bit of a blind spot. It’s understandable. There is so much that even well-educated people with ADHD fail to grasp about the condition.

What the public largely fails to understand, however, is that ADHD involves so much more than one’s school performance, “behavior,”  ability to “conform to society,”  or whatever preconceived notion one has about the condition.  ADHD also carries with it a risk of physiological adverse effects, and these can begin very early on.

It is clear that the The New York Times, The Daily Beast, The Today Show, and other “news outlets” that glommed onto the 10,000 Toddlers meme are not interested in this angle. They have their own angle: Children with ADHD are “brats,” and that’s how their graphic designers illustrate the pieces, with photos of screaming, angry children. (I’ve used photos of a different type here.) Betraying their lack of a background in science, they imply that all children that survive birth are mentally healthy. As if the brain, that most vulnerable of organ, is protected from all that can befall heart, lungs, limbs, and every other organ. Very children with ADHD can be extremely impaired, and it is up to the evaluating physician as to how to proceed, not sports reporter Alan Schwarz. The FDA acknowledges that sometimes stimulant medications can be used for young children, with these guidelines.

The Insatiable, Sleepless Toddler

For example, many toddlers and even babies with ADHD are chronically unhappy, about everything. Their distraught parents can do nothing right, because the problem is not on the outside but on the inside, in the neural pathways. I wrote in my book about some adults with ADHD being insatiable – there’s never enough of anything to make them happy. So, think about the Insatiable Baby or the Insatiable Toddler.

This is no minor thing. I’ve met babies whose ADHD makes them chronically unhappy, and they broke my heart. Imagine being a parent unable to console a child, despite your best efforts. Moreover, sleep is so difficult for them. They awaken at the slightest noise, when they finally get to sleep (and that can be extremely difficult). They climb out of their cribs and become a danger to themselves. Some cannot sit still long enough to nurse, and they cannot direct their gaze long enough at their caregiver to form that all-important connection that the neo-hippies are always yammering that the babies “need more than medication.” What if some need both?

Their young lives are miserable, as anyone with a heart can clearly see. What kind of start in life is this? Who cannot  be compassionate to such a child and want to understand how to help instead of inflicting the worst kind of ignorance on the child and family? Only someone aiming for a Pulitzer, high blog ratings in GoogleAnalytics, or a spot on a talk show.

Could You Watch a Baby Turn Blue—and Faint?

Many moms have told me of a “hyperactive” fetus, constantly kicking. ADHD is also associated with a higher rate of prematurity. In other words, the neurobiology can make itself known early on. Those babies on the far end of the ADHD spectrum can and often do grow up to be toddlers who will walk out the front door and into traffic, or crawl out of windows. And die or become maimed or brain-injured.

There are even toddlers whose emotional dysregulation is so severe they develop pediatric syncope—that is, they turn blue and faint.  I’ve seen this; it is horrifying to feel so helpless when the child is so distressed.  There are other terms for it, including Expiratory Apnea. And while I was researching it for a friend—an incredibly attentive, empathic, loving, and patient mother—many mothers of children with ADHD reported to me the same phenomenon. Their doctors were clueless.

We know that dopamine is involved with adult sleep apnea, which is so common among adults with ADHD. Why would it not also affect newborns, toddlers, and young children?

A friend and her husband (who has severe ADHD, now well-managed) were grief-stricken when their newborn displayed what appeared to be sleep apnea. It simply stopped breathing. Who wouldn’t be apoplectic?  The parents weren’t worried about the baby being naughty or not learning differential equations, Alan Schwarz. They were worried about him surviving!

No one is suggesting cavalierly giving neurostimulants to a newborn or baby (though, logically, if that is what the child needed, it would be a health-giving measure, much like any given to at-risk infants). The point is, dear public, ADHD is about more than “behavior.” It can have very serious physiological effects. Blindly reacting to click-bait from The New York Times or some over-reaching CDC employee with an agenda is not helpful to anyone, especially children.

“They’ll Grow Out Of It”

Typically, pediatricians didn’t understand these issues when my friends presented them. They’d head pat and reassure, “The child will grow out of it.” But what actually happened is that the behavior changed to a more developmentally appropriate expression of the same problem as the child grew.  In other words, the pre-verbal toddler who got so frustrated that he fainted becomes the verbal four-year-old who yells and screams in frustration—and on it goes up the developmental ladder. The pediatric syncope didn’t go away; it moved to another mode of expression.

Unfortunately, the ADHD diagnosis comes much later for many of these children, after so many bad habits and blows to self-esteem had taken root, even after illnesses such as allergies and asthma further circumscribe their lives. But all it takes is one (more) sensationalistic story from The New York Times‘ Alan Schwarz, quoting low-level clinicians and publicity-hungry self-promoters, and suddenly there is the SHOCKING story that 10,000 toddlers are being given ADHD medications.

10,000 is a Guesstimate

Oh, but it turns out that the 10,000 figure is only an estimate from the CDC official who gave the lecture on which Schwarz bases his “reporting.” The CDC has yet to release the report to the public, despite my repeated queries to the person who allegedly released the report at a conference in Georgia, Susanna Visser.

Side story:  This is at least the second time the CDC has acted in a dodgy and unorthodox manner by collaborating with the Times, especially given the paper’s blatant bias on the topic  in general and with Schwarz in particular, a former sports reporter who has no apparent life-science background. Veteran journalist Paul Raeburn questioned the first occurrence at the M.I.T.Knight Science Journalism Center’s Tracker (“peer review with science journalism”) on April 3, 2013:

The story, by Alan Schwarz and Sarah Cohen with reporting contributed by Allison Kopicki, did not say that the figures came from an announcement or publication by the CDC. It said that the Times had “obtained the raw data from the agency and compiled the results” itself.

That’s tricky. The CDC could make a mistake compiling and interpreting its own data; such things happen. But for my money, I’d rather have the CDC doing that than entrust the job to Schwarz and Cohen. Where did they get the data? What form was it in? What did they have to do to come up with the figures they report? Did they enlist a scientist from the CDC or elsewhere to check and validate their analysis?

We are not told. The first quote in the story comes from a Yale neurologist who says he is “floored” by the rise in the diagnosis and treatment of ADHD. It’s not a terribly insightful comment; I suspect most readers did not need an expert to tell them that the statistics were remarkable.

The story, published on March 31, now has a string of corrections appended to it. It picked up its first correction on April 1, another yesterday, and another one today. Each of the corrections fixes a misstatement concerning the statistics. If Schwarz had told us more about how he got that data and what it looked like, and if he’d brought in a scientist to help him analyze it, perhaps he would not have made those mistakes.

Back to the Main Story: Never mind the Times‘ known bias and skewed reporting. A host of traffic-hungry sites (The Today Show, The Daily Beast, Boston.com, and various bloggers) picked up the story and added their own purple prose. Readers across the Internet are already grabbing their pitchforks preparing to hunt down Big Pharma, the doctors doing the prescribing, the lazy parents wanting the “quick fix,” and all the rest.  Based on such misinformation. Talk about impulsivity.

Without any of these facts, without

knowing exactly how many young children

are diagnosed and treated

vis a vis the estimated prevalence,

without even knowing if the

treatment is working, we know

absolutely nothing at all.

 

That children on Medicaid were receiving the medication in question seemed to enrage readers the most, and there was much blaming of “lazy” parents at the Times’ insipid companion piece (the Motherlode column entitled “The New Inequality for Toddlers: Less Income; More Ritalin”).  Columnist KJ Dell’Antonia, who writes about her children in a blog called “Raising Devils,” hammered home the idea that these children were being “drugged” only because they were poor.

NYTimes’ Blogger Dell’Antonia  Questions Basis for ADHD

Neither Dell’Antonia nor the readers commenting (including a self-described pediatrician) seemed to understand that ADHD is a risk factor for poverty and that these children might be suffering from the most severe ADHD symptoms, compounded by their parents’ ADHD and other risk factor such as substance abuse disorders.  Thinking about this kind of context  would require the kind of sophistication not apparently accessible to bloggers such as Dell’Antonia, who writes: “Particularly given that there is still a debate among practitioners and researchers regarding whether ADHD has a biological basis, or is a label given to a collection of symptoms.”

With so many good journalists out of work, how do uninformed people like this get hired?

Not One News Report Has Examined the Data

Because the CDC’s Visser has not been forthcoming in sharing with the public the data she shared with that Georgia audience, we can only guess at the percentage of toddlers receiving ADHD medical treatment. (She has ignored my repeated requests, and so has the CDC.) Absolutely nothing seems publicly  known about what kind and how much medication these alleged children are receiving, and what other services or interventions. Until the CDC decides to share with the tax-paying public, consider these Medicaid enrollment figures from a factsheet on Medicaid published by the American  Academy of Pediatrics:

  • 30.6M infants and children through age 18 (that represents 50.2% of all Medicaid enrollees, 38.9% of all US children through age 18)
  •  2.4M infants (4.0% of all Medicaid enrollees; 56.6% of all US infants)

In light of these huge numbers, 10,000 children “estimated” by Ms. Visser as being treated medically for ADHD—as having ADHD severe enough to merit treatment at a younger-than-average age—no longer seems so “outrageous,” as one headline put it. Does it?

Without any of these facts, without knowing exactly how many children are diagnosed and treated vis a vis the estimated prevalence, without even knowing if the treatment is working, we know absolutely nothing at all. And the fact that the online world is bursting neck veins over this? Very scary. What else will such a gullible public believe?

Newsflash: ADHD Can Create Entrenched Poverty

Left unaddressed over the generations, ADHD can result in miserably entrenched poverty, substance abuse, and more. In other words, the people suffering the most adverse affects of ADHD are those at the lower rungs of society, with neurogenetic nature and environmental nurture compounding the trauma generation after generation.

Yes, absolutely. No question. Our economic structure is further oppressing these people. Headstart programs have been cut, when they’ve been shown to be beneficial and cost-effective, not to mention humane. And all the rest.

But the fact remains: Even with better circumstances, many of these young children will still have ADHD, their parents will have it, and most likely their grandparents, too. No matter how many “hands up” they are given, they will be unlikely to make good use of opportunities until their ADHD and commonly co-existing conditions are managed. This is as true for highly impaired children in the lower rungs of the socioeconomic strata as well as the highest rungs.

The bottom line is this: There are legitimate reasons for treating very young children medically for ADHD, and we simply do not know the particulars behind this story—how many children at what ages are being medically treated and for what reason. We only have Schwarz’s cherry-picked report and the ensuing hysteria.

The only thing we know for sure is this: Our most disadvantaged people who have ADHD deserve comprehensive help, including screening the parents and providing treatment for them, too—the “genetic donors”—so they can best help their child and break the generational cycle.

They also deserve that you, me, and the powers that be slow down hair-trigger emotions and make a sincere attempt to comprehend what’s happening instead of making shamefully lame judgments and Olympic-sized leaps to conclusion that lead only to more disastrous consequences.

Mostly, they and we need news outlets who care more about these people than they do their own profits—and reporters who have at some point in their lives taken a biology class.

Alan Schwarz would not dare publicly bully children born with heart defects, malformed lungs and limbs, vision problems, diabetes type I, hemophilia, or asthma. Yet, when it comes to the most vulnerable, delicate organ of all—the brain—and the most documented psychiatric condition of childhood—ADHD—he finds it fair game. Alan, please go back to the sports deck. Your flair with “statistics” would be more useful there.

Bookmark and Share

Tags: , , , , , , ,

  1. Penny Williams’s avatar

    As usual, Gina Pera knocks it out of the park with her rebuttal to the attack of mass media on ADHD! There’s an epidemic in the media of carefully picking and choosing the pieces of facts that craft a sensational article, rather than telling the whole truth and letting the public form their own opinion. It’s much to blame for the crushing stigma that ADHD still has in American Society. We all must stand up with Ms. Pera and continue to voice the real truth, the whole truth, for the bright future of all these children with ADHD. I stand with you!

    Penny Williams
    Author of “Boy Without Instructions: Surviving the Learning Curve of Parenting a Child with ADHD”
    http://BoyWithoutInstructions.com

    Reply

    1. Gina Pera’s avatar

      Thank you so much, Penny. I’ve lost a few blog subscribers over this one.

    2. Paul’s avatar

      Dear Gina,
      Thanks for a well thought out and written piece. As well as Penny Williams response.

      In my own thinking, (whether it is connected to my ADHD or not), it highlights the increasingly missing aspect of journalism, and even politics. “Completeness”, that is, the ability to portray a wide spectrum of an issue in a human format, with truth being sought and explained to disseminate information from and to multiple viewpoints, rather than imposing selected information with an agenda or result to be promoted, through what can best be described, as parroted information intended to be duplicated.

      Knowing that truth itself can often be variously perceived in the eye of the beholder, as a human trait, relying on human foundations, complicates matters for me.

      “Labels” or “groups of traits” regarding people. are very difficult for me to comprehend, as the borders are never well understood, or seem to be ever changing, and often are defined by those who seem to have “power”.

      Stereotyping individuals with ADHD, their treatment, or any “difference”, WITHOUT A DESIRE TO UNDERSTAND the known and possible underlying factors, including the resulting social factors, especially the internal and external struggles and self perceptions, from toddler to young adult to adulthood and even old age, does little to help those who deal with it themselves, or those who are truly trying to help. It does not help society at large either. The big picture must begin and continue with the people, individuals, who are often standing right next to you.

      The possible reasons that form or cause the tendency for the labels or group of traits and the resulting treatments or solutions are far more interesting, and of solution value, than the labels themselves. Thanks for bringing them forward.

      Reply

      1. Gina Pera’s avatar

        Thank you for that eloquent response, Paul.

        Even though I do not have ADHD, I have many, many MANY friends with ADHD — and a husband, too.

        I was also raised to value education. The funny story about my mother first meeting my husband is that, unfortunately, her stroke dementia meant that she was not fully herself by then. Still, when she asked my husband his life of work and he said, “Scientist,” she paused and said, “Oh, a holy man.” :-)

        She liked my sisters’ husbands, but she never called them holy men!

        What’s more, I studied to become a journalist because I recognized the important role of the “watchdog.”

        It saddens me beyond all measure to see the “watchdog” turn into the “attack dog” on the principles and the people I love and admire.

        best,
        g

      2. Gina Pera’s avatar

        P.S. Paul, last night at our Adult ADHD “Salon” in Palo Alto (a monthly discussion group I’ve let for many years), one new member said on this topic: Americans don’t like to think about ANYTHING, do they?

        It’s true. For Americans or people in other countries, thinking is hard. That’s why humans resist it.

        This idea is laid out beautifully in The Invisible Gorilla, by two cognitive scientists.

        Reply

      3. Patty@homemakersdaily.com’s avatar

        I know that my 4-year-old granddaughter has ADHD. I have it. My two kids have it. I see it in her. I don’t care what any health professional might say, I know she has it. I spend a lot of time with her and the symptoms are there.

        Recently she was tested to see if she would qualify for a pre-school program at the early learning center where her younger brother goes (he’s autistic). It’s a peer model program. She had to score 75%. Ivy is extremely intelligent but I was a little bit worried because kids with ADHD tend to score badly on tests. So I warned my daughter-in-law. She asked if she should tell them my theory. I said no. Ivy was tested and her score was 8%. We couldn’t believe it! But a few of the questions and answers they shared with us confirmed what I told my daughter-in-law. Ivy likes to be called “Funny Bunny” so when they asked her name, that’s what she said. That was wrong, obviously. And they asked her a question about what she would do if a fly came towards her. They were looking for swat it or something like that. She commented that it might land on her. So her answers weren’t WRONG but they weren’t within the test’s range for normal.

        The bottom line is that she gets to go to school in the “regular” program. It’s not a big deal because maybe they’ll recognize her ADHD and prepare her for kindergarten.

        But don’t anybody try to tell me you can’t tell when younger children have ADHD. Maybe you can’t always tell – but I can sure tell in her.

        Thank you for the article.

        Reply

        1. Gina Pera’s avatar

          Exactly. No legitimate expert would say that severe ADHD in young children is hard to tell– or benign.

          Hallowell dismisses ADHD in young children as “children being rambunctious” and he shames these parents.

          But severe ADHD symptoms can have life-threatening consequences to these children.

          He simply is not connected to outcome. Low empathy. An appalling attitude, given that it’s vulnerable children we’re talking about.

          take care,
          g

Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>