April is Autism Action Month, but here at TMR we know that autism is only the tip of the iceberg. Remember how only one-seventh of the iceberg is visible above the water line? That’s autism. Below that, is a much larger, not so visible, section of the population that is also living life chronically ill (what I like to call the “infrared” portion of the spectrum, just not as ill as those with autism. The rates of many other childhood illnesses are rising nearly as dramatically as that of autism. Asthma, allergies (especially life-threatening food allergies), ADHD, and apraxia are all getting diagnosed with frightening frequency. And that’s just the A’s. Many, many children are taking medication for one or more of these conditions, and a high proportion of those expect to be taking those medications for the rest of their lives. In fact, so many children are sick these days that medical professionals tend to shrug their shoulders and imply that’s “normal.”
I was born in the ‘60s and I can clearly remember when that wasn’t “normal.” I lived in five different states and I was the only one I knew who had chronic ear infections (not in infancy as is so common today, but after I started school). I was the only one I knew with chronic nasty allergies (until I got to college, anyway), so of course I was the only one I knew with asthma too. Well, other than my kid brother, that is. My older siblings, all six of them, had no such issues.
Why is there so little curiosity in the medical world as to what’s going on? Doctors write plenty of prescriptions, but do they ever dig deeper to try and understand what’s really happening? My mother is one of thirteen children. She had four younger siblings, eight children and eighteen grandchildren before my daughter came along: the baby who couldn’t be put down, didn’t nap, was ultra-sensitive to sound and the feel of water, flatly refused to eat baby food, had separation anxiety at the age of six months, and was walking at the age most children were learning to crawl. My mother had never seen a baby like Trinity before. She wasn’t anything like the babies described in all the baby books either. All but one, that is. Dr. William Sears is a pediatrician who had three children already when his daughter Hayden came along. In The Baby Book he describes her as “high needs.” Her reactions were very different from any baby he had previously dealt with, and many of the strategies he had already learned with three prior children were useless. His Hayden sounded an awful lot like my Trinity. In talking to many, many parents, I’ve noticed that more and more “high-needs” babies are being born. Why? What is causing these high needs, anyway?
My “high-needs” baby grew up to be a bright talented teenager who was officially diagnosed with ADHD this past year. She’s by no means the only one. She’s currently in eighth grade in a public middle school in Brooklyn and at least four other children in her class have told her that they too have ADHD. They are all on medications and/or have accommodations.
I’ve read many articles lamenting the current high rates of medicated children that highlight ADHD in particular. The latest numbers from the CDC say that 11% of children ages 3-17 have been diagnosed with ADHD. One out of five boys in high school is diagnosed with ADHD. Many of the articles wonder if we’re expecting too much of our children, and, therefore, treating “normal” children as if they are “sick.” They cite the high rates of diagnosis and medication as evidence that something has gone very wrong. “To say that a tenth of all children have a biologic condition that affects their life enough to call it a disorder just does not make sense,” says Dr. William Barbaresi, director of the developmental-medicine center at Boston Children’s Hospital. “Mild symptoms are being diagnosed so readily, which goes well beyond the disorder and beyond the zone of ambiguity to pure enhancement of children who are otherwise healthy,” says Dr. William Graf, a pediatric neurologist and professor at the Yale School of Medicine. While I agree that something has indeed gone very wrong and there is way too much prescribing of psychiatric drugs for children and adolescents, I don’t think most mainstream articles have put their fingers on what has gone wrong.
The implication in those articles is that we’re taking “normal” childhood behavior and pretending that there’s something wrong with it. Small children, especially boys, shouldn’t be expected to be able to sit still all day in school, or behave according to school rules since the rules are so counter to their own nature. There may be an element of that with respect to parents of high school students who are giving them Ritalin, Adderall or Concerta in order to boost their test scores. So it’s a seductive thought; maybe there really is nothing “wrong” with all these children who carry the ADHD label. But when it comes down to it, how many parents could there be who are willing to risk their children’s long-term health – after all, we know very little about the consequences of long-term use of ADHD drugs – in exchange for the possibility of a few extra points on a standardized test? Isn’t it more likely they are turning to medication in order to deal with a difficult challenge?
(By the way, the argument probably sounds familiar to you if you’re familiar with autism and the meteoric rise in autism rates. The trend in mainstream media is to downplay the rise by claiming that it’s explained by “better diagnosis,” or it’s just a reclassification of issues that always existed in the same kinds of numbers – which you know is utter nonsense if you’ve been paying attention at all. Or even to claim that parents are seeking the “trendy” diagnosis in order to obtain “services” for their children. No one ever seems to stop and ask themselves why parents would be seeking out services for children who don’t have problems. Personally, I’ve encountered precious few, if any, parents interested in services for their children for non-existent or trivial matters.)
And then I remember my own childhood. I was never in a classroom with less than 30 children, and we never had a student teacher for more than a few weeks a year. Parents did not appear in the classroom at all except for birthdays and holidays. In the entirety of my elementary school years I only remember one significant altercation between a teacher and a student. It was about gum chewing. I’m sure there were more; the cliché of the kid being sent to the principal’s office didn’t exist for nothing. But my overall sense is that the vast majority of teachers – even young, female teachers – had no problem keeping a classroom with anywhere from 30–44 children (yep, there were 44 kids in my first-grade class) engaged and reasonably well-behaved all day long all by themselves. And that was back when the desks were frequently placed in rows, with the lessons taking place on the blackboard in the front of the room. I don’t know anyone, teacher or parent, who can even imagine such a thing these days. Something has qualitatively changed about today’s children.
Lest you think I just have a faulty memory, I’ll give you some more food for thought. Researchers Rachel Klein and Salvatore Mannuzza conducted a long-term study following 226 boys with ADHD starting when they were eight years old. At age 19, ADHD subjects had “completed less formal schooling, achieved lower grades, failed more courses and were more often expelled” than control subjects. The ADHD subjects were eight times more likely than the controls to develop substance use disorder (17% v. 2%). ADHD subjects were arrested at almost twice the rate of the controls. Children with ADHD were two-and-a-half times more likely to have any psychiatric disorder in adolescence than control subjects. A recent study found that teens with ADHD were 2-3 times as likely to have substance abuse issues as teens without ADHD. Teens with ADHD are two to four times more likely to have a car accident than teens without ADHD.
These are not minor effects. I would think that for the average parent they would be pretty damned sobering. Given these kinds of statistics it seems likely to me that the vast majority of children diagnosed with ADHD do have a disorder that is affecting their lives significantly. And that is a relatively new phenomenon.
So what do we do about it? Give our children strong stimulants that could have severe and significant long-term health consequences, possibly for the rest of their lives? Or figure out what the hell is causing it and do what we can to restore them to health? In essence, the two are not necessarily mutually exclusive, but it seems that in practice they are. The majority of people I know who are searching out the biological roots of the issue are rejecting psychiatric drugs, while the majority of people who are medicating their children seem to have little to no curiosity about why their children are the way they are.
My experience has confirmed again and again that ADHD, as well as a number of other chronic childhood conditions, shares many of the same causes and effective treatments with autism. We need to get that message out to doctors and parents who still think we’re all “anti-vaccine wackos.” Whether or not they have acknowledged it to themselves, they are aware that something is “off” in children’s health today and they know that medication is just covering the problem, not fixing it.
The revolution we envision here at TMR is going to require huge participation from the general public. It’s going to require adding the weight of many of those affected by the other six-sevenths of the iceberg to our end of the rope in order to yank the rise of chronic children’s illness to a screeching halt and — finally — begin to reverse the trend. This is one tug of war we need to win. Our children’s lives depend on it. So, please, do what you can to help us get the word out; this month and always, it ain’t just autism.
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