My Child’s Doctor Got It Wrong
I was sure my son had ADHD — until I found out, much later, that he didn’t. Here’s why the medical community needs to end an epidemic of misdiagnoses.
My son’s doctor got it all wrong. I didn’t think so at the time. He was a highly regarded ADHD specialist, and I hung on every word he said. At the end of our visit, he made the solemn 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. Pharmaceutical companies have made considerable efforts in the last couple of decades to educate patients and physicians about attention deficit. As a parent and a physician, I wanted treatment — and a misdiagnosis of ADHD was the furthest thing from my mind.
I didn’t want treatment just for my kid; I wanted it for everybody else’s, too. I’d see a student bouncing off the walls and think, “They should medicate that kid.” Frustrated teachers urged parents to consider meds, while I congratulated myself on my superior parenting. I was wrong about that.
[Self-Test: Is It Really ADHD?]
When Meds Didn’t Work
ADHD medicines temporarily give all kids more energy and focus, not just kids with ADHD, as many drug companies claim. If your child doesn’t have ADHD, medication may do more harm than good. More testing revealed that my son had an auditory processing disorder — in which the brain doesn’t process sounds properly — and not ADHD. He also had a severe milk allergy, which made him fatigued and unfocused.
No one in the healthcare system had suggested any diagnosis other than ADHD. My child isn’t alone. The child I saw bouncing off the walls had Sensory Processing Disorder (SPD). Another had visual developmental problems. Another had celiac disease. All were diagnosed with ADHD.
When a recent study at the Centers for Disease Control and Prevention concluded that the number of children diagnosed with ADHD jumped 42 percent in the last eight years, I was skeptical. The report reveals that 6.5 million children have been diagnosed, and 3.5 million are medicated — a 28 percent increase in the last four years.
Distracted kids have been around forever, but ADHD didn’t show up in the Diagnostic and Statistical Manual until 1980. Back then, psychiatrists saw the condition more as a hypothesis than a disease, and doctors were reluctant to medicate it with stimulants. By the end of the 1990s, though, a friend who worked at a pharmaceutical company assured me that it was a real condition, and his company’s goal was to raise awareness of it.
[Self-Test: Could It Be Auditory Processing Disorder?]
They did. Now between 11 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 know only to look for ADHD, that is what will be found and treated.
Disorders That Look Like ADHD
Auditory processing disorders look like ADHD. If a child is slow to decode spoken words, he appears inattentive. It’s estimated that 2 to 5 percent of children have APD. These kids can’t attend to verbal cues and often seem tuned out — but it’s not because of ADHD.
Another condition often mistaken for ADHD is SPD. Some 5.3 percent of all kindergartners meet the screening criteria for the disorder. It’s hard for most of us to grasp the concept of SPD, so it’s not the first thing that parents, teachers, or doctors consider. Imagine being exquisitely sensitive to your shirt tags or the seams on your socks. That’s all you think about in school — and you can’t pay attention to the teacher. You might be agitated. You might try to soothe yourself. You might be hyperactive. But it’s not because of ADHD.
Visual problems also cause children to appear inattentive. But developmental visual disorders — problems with eye tracking, convergence, or visual sequencing — cannot be picked up by a pediatrician’s eye chart. No ordinary optometrist can detect it. You have to see a developmental optometrist. To seek one of these means you have a high level of suspicion. Because of this, visual problems are under-diagnosed. If a child has visual problems, he won’t want to read or do paperwork — and he will seem inattentive. But it’s not because of ADHD.
As a physician, I get it. Information about these disorders wasn’t out there — that’s why it took me years to figure it out. There is no excuse for overlooking food allergies, though. Milk allergy is the most common, affecting 2 to 3 percent of adults and probably even more children. Wheat and soy allergies are increasingly common. When children ingest allergens, they become fatigued, irritated, and can’t focus — but it’s not because of ADHD.
ADHD can coexist with most of these disorders. And because stimulants improve everyone’s attention, it seems that the meds help at first. However, these other disorders cannot be fixed with pills. Only the appropriate therapy can do that. Children with APD respond to listening therapy and programs like Fast ForWord. Children with SPD respond to occupational therapy; their symptoms will likely be worsened by stimulants.
An Epidemic of Missed Diagnoses
We may or may not have an epidemic of ADHD in this country. But we do have an epidemic of missed diagnoses — the result of a campaign to raise awareness about one cause of inattention, but not the others. The fact that many of us in healthcare are ignorant about these common problems reflects the ownership that pharmaceutical companies have over our medical knowledge.
For the sake of our next generation, the medical community needs to step up. The diagnostic guidelines for pediatricians, neurologists, psychiatrists — and anyone calling herself an ADHD specialist — should include screening for these other problems first. ADHD should be diagnosed only after medical and neurologic conditions are ruled out.
In the meantime, a child who is diagnosed with ADHD may never know the cause of his problems. Years go by. Children grow. Their disabilities are ignored, their self-esteem is damaged. If false diagnoses go unchecked, a child’s ability to function in the world is permanently compromised. This is a tragedy that no pill can fix.
This article first appeared on salon.com. An online version remains in the Salon archives. Reprinted with permission.