My son’s doctor got it all wrong. Of course, I didn’t think so at the time. In fact, he was a highly regarded ADHD specialist and I hung on every word he said. Then, at the end of our visit, he made the solemn but somewhat relieving pronouncement: “Your son has ADHD.”
Except that he didn’t.
But back then, even as a doctor, I was credulous. I wanted a diagnosis and a treatment. That’s what everyone in the healthcare system wants. It’s no wonder. As the New York Times covered so ably this weekend, pharmaceutical companies have made considerable efforts in the last couple of decades to educate both patients and physicians on the topic. And, as both a parent and a physician, I wanted treatment.
But, I didn’t just want treatment for my kid, I wanted it for everybody else’s, too. I’d see students bouncing off the walls and think, “They should medicate that kid.” Frustrated teachers urged parents to at least consider meds, while I would secretly congratulate myself on my superior parenting.
It took years to find out I was wrong.
Eventually, it became clear that the ADHD medicines didn’t really work: They temporarily give all kids more energy and focus, not just ADHD kids as the drug companies claim. But if your child doesn’t have ADHD, they can cause more harm than good. More testing revealed that my son had an auditory processing disorder — wherein the brain doesn’t process sounds properly — and not ADHD. He also had a severe milk allergy, which made him fatigued and unfocused.
But no one in the healthcare system — not the pediatrician, the social worker, the psychiatrist, the self-styled ADHD specialist — ever suggested any other diagnosis but ADHD. And my kid isn’t alone. That child I saw bounding off the walls had something called a sensory processing disorder. Another had visual developmental problems. Yet another had celiac disease. And all of them were at one point wrongly diagnosed with ADHD.
So when a study published in November by a Centers for Disease Control epidemiologist said that the number of kids diagnosed with ADHD jumped 42 percent in the last eight years, I was skeptical. That report reveals that 6.5 million children now have the diagnosis, and 3.5 million are medicated — a 28 percent increase in the last four years.
Although distracted kids have been around forever, the term “ADHD” didn’t show up in the Diagnostic and Statistical Manual III (the DSM3-R) until 1987. Back then, psychiatrists viewed it more as a hypothesis than an actual disease, and doctors were taking a cautious approach to medicating with stimulants. But by the end of the 1990s, I remember a friend who worked at a pharmaceutical company assuring me that of course it was a real condition, and his company’s goal was to raise awareness.
And raise it they did. Now somewhere between 11 percent and 15 percent of all children are diagnosed, and in the last 30 years the use of medicines for the condition has increased 20-fold. At this point, it’s obvious that not everyone who has attention problems has ADHD. But if healthcare professionals only know about ADHD, that is what will get diagnosed and treated.
Auditory processing disorders look for all the world like ADHD: If a child is slow to decode spoken words, he’s going to appear inattentive. It’s estimated that 2 to 5 percent of children have APD. These kids can’t attend to verbal cues and often seemed tuned out — but it’s not ADHD.
Another condition commonly mistaken for ADHD is something called sensory processing disorder. Some 5.3 percent of kindergartners meet the screening criteria for SPD. It’s hard for most of us to even grasp the concept of SPD, so it’s not something that parents, teachers or doctors even consider. But imagine being exquisitely sensitive to something trivial like your shirt tags or the seams on your socks. That’s all you’d be thinking about — and you’d be unable to pay attention to the teacher. You might be agitated. You might try to soothe yourself. You might pace. You might even be hyperactive. But it’s not ADHD.
Visual problems can also cause children to appear inattentive. But developmental visual disorders — like problems with eye tracking, convergence or visual sequencing — cannot be picked up by a pediatrician’s eye chart. Not even a regular eye doctor can detect it. You have to get your kid to a developmental optometrist. That means you have to have a high level of suspicion. And because of this, it’s probably significantly underdiagnosed. Consider that if a child has visual problems he won’t want to read or do paperwork — and he will look inattentive. But it’s not ADHD.
Now, as a physician, I get it. The information just isn’t out there —that’s why it took me years to figure this out. I missed it. Our doctors missed it. Our teachers and social workers and, yes, the nurses missed it. The only thing we’ve all ever heard of is ADHD, so these other disorders aren’t even considered.
On the other hand, there really is no excuse for overlooking food allergies — and they are surprisingly common. Milk allergy is the most common food allergy, affecting 2 to 3 percent of us and probably higher in children. Wheat and soy allergies are increasingly common. Unfortunately, milk and wheat are everywhere in school. (Imagine how these kids feel after the pizza lunch.) When children are constantly ingesting allergens, they’re fatigued, irritated and can’t focus — but it’s not ADHD.
Of course, ADHD can coexist with some of these disorders. And because stimulants do work to improve everyone’s attention, at first it can seem like the meds help. However, these other disorders cannot be fixed with pills. Only the appropriate therapy can do that. Children with audio processing disorder can respond to listening therapy and programs like Earobics and Fast ForWord. Children with sensory processing disorder can respond to occupational therapy — while symptoms are likely worsened by stimulants. Visual processing problems respond well to treatment by a good developmental optometrist. And allergies respond to simple elimination diets.
We may or may not have an epidemic of ADHD in this country. But we definitely have an epidemic of missed diagnoses – the result of the pharmaceutical campaign to raise awareness for one cause of inattention, but none of the others. The fact that so many of us in healthcare are so ignorant of these common problems reflects the ownership that pharmaceutical companies have over our entire medical knowledge base.
But for the sake of our next generation, the medical community needs to step up. The diagnostic guidelines for pediatricians, neurologists, psychiatrists — and anyone else calling themselves an ADHD specialist — should include screening for these other problems first. ADHD should be treated like all other psychiatric conditions — it should be diagnosed after medical and neurologic conditions are ruled out.
The medicines prescribed for ADHD are not benign. No psychiatric medicines are. Indeed, many industry watchers already strongly suspect that overprescribing of antidepressants has led to an epidemic of bipolar and disability. It’s well known that stimulant drugs can be abused, and we don’t know what the long-term consequences are in terms of addiction and depression and disability.
In the meanwhile, once labeled and medicated for ADHD, finding the true cause of a child’s difficulties may never happen. Years go by. Children grow. Their true disabilities are ignored, their behavior and self-esteem damaged. If left unchecked, their ability to function in the world could be permanently compromised.
This is an American tragedy that no amount of Adderall is going to fix.