Unintended Consequences: Autism, ADHD and Early Diagnosis

GS How did you first conclude that there might be a problem with misdiagnosis of disorders such as autism?

EG It was partly professional and partly personal. In my office, children kept arriving at my doorstep with diagnoses that amazed me because I just didn’t see the evidence. And beyond that, I kept seeing children and families who I think had been hurt by that diagnosis in the mental health system. So it was largely driven by an ethical impulse to somehow correct that, and, as a psychologist, being ethically offended that in my profession a diagnosis could actually hurt someone rather than help. That was, from an emotional standpoint, the driving force to write the book; but the more I researched it, the more I was stunned by the statistics in terms of the astronomical rise in these diagnoses over the past decade.

GS How does a diagnosis hurt a child? Some might say it’s better to overdiagnose than underdiagnose; at least you’d catch the ones who have the problem.

EG That’s a point that is often put to me, but I think we have a blind spot for the ways in which diagnoses can hurt a child. For instance, in the chapter on autism in my book, there’s the story of a child that I saw in my practice a number of years ago who had a variety of autistic-like problems. His parents took him to one of the nationally recognized centers on autism. Within a 45-minute interview, a physician told this mother that he was certain her son had autism and that an assessment would need to be done, but he was pretty clear and warned that she should prepare herself for a life of challenges, and that they should start saving money, because it’s expensive to care for an autistic child. The mother was stunned but wanted to trust the doctor. So she took her son to a regional center, and they assessed him as not being autistic. She thought that was incorrect and spent thousands of dollars to get him the diagnosis because she trusted the original assessment. But after she stepped back from the frenzy of it all, she came to me. I knew within two minutes of meeting this boy that he did not have autism spectrum disorder. I would say that’s more common than not in my practice; I can tell within a few minutes of meeting a child, through a variety of nondirective play interactions.

That story, and others like it, led me to look more deeply into this topic. Why is it that these disorders are overdiagnosed? And I think the evidence really supports that to be the case. In fact, every two to three months in the Los Angeles Times, the New York Times, the Washington Post, you get articles about the astronomical rise in these diagnoses. So there’s something going on in the zeitgeist out there; there’s an awareness of it. And the statistics support that. For instance, in the past decade there’s been a 42 percent increase in the number of diagnosed cases of ADHD, a 78 percent increase in the number of cases of autism spectrum disorder, and a 40-fold increase in cases of bipolar disorder.

You match those statistics against another set: studies like the one out of the University of North Carolina at Chapel Hill show that about 30 percent of kids diagnosed as autistic at age two no longer fit the criteria for the disorder at age four. And then there’s the National Survey of Children’s Health, a massive study of about 78,000 families that shows that upwards of 40 percent of children that get assigned a diagnosis of autism spectrum disorder no longer meet the criteria for the disorder by the time they hit 18. In my estimation, autism is a lifelong neuropsychiatric condition that you don’t “no longer have” when you grow up, which leads me to believe that the statistics support the idea that it is massively overdiagnosed. But that is a conservative perspective. I think there are people out there who believe you can shed autistic symptoms. I happen not to believe that. I think that autism spectrum disorder is a long-term, in most cases disabling, lifelong neuropsychiatric disorder.

GS I know you balance looking into the brain for the problem with looking outside for the problem, but of course there are studies showing that “real” autism spectrum disorder does originate in the brain. I think they’ve narrowed it down to the 20^th week of pregnancy or thereabouts?

EG Yes, but problems arise when we listen to criteria and include “mild cases”; I think it’s these cases that result in the astronomical rise in diagnoses. I would argue that it’s extraordinarily difficult to tease apart what is a mild case of autism spectrum disorder versus a variety of other things that are a part of normal human variation, especially in boys.

“I would argue that it’s extraordinarily difficult to tease apart what is a mild case of autism spectrum disorder versus a variety of other things that are a part of normal human variation.”

GS You’re not denying that there are children with these disorders; you’re just saying that we need to pull back from casually throwing those labels on kids. What problems can arise from mislabeling children with disorders?

EG Unnecessary medication, of course. But there are lots of problems that parents may not appreciate. There are many occupations where having a history of mental illness can foreclose a professional opportunity: positions in the military, police force, high-security positions. There are states in the country where you can’t get a pilot’s license or a trucker’s license if you have a history of mental illness. Disability and life insurance rates may be higher for you. Being mislabeled can also create a self-fulfilling prophecy: insofar as parents or children reify the diagnosis and believe something is due to a disordered or fractured brain, they may assume those children have no control over their behavior. If they have a broken brain, we automatically assume we shouldn’t hold them responsible for their behavior. So then they may not be motivated to change and may fall back on brain-based rationalizations for their behavior.

GS In other words, we don’t work with them in ways that we otherwise might if we didn’t put it down to a disorder. The upshot is that there are serious consequences to overdiagnosing. So why do we overdiagnose? Are we sometimes medicating behaviors that simply stem from attachment issues that could be resolved, perhaps, if we weren’t seeing the behaviors as symptoms of a disorder?

EG There’s a section in my book called the parent-child attachment dance, where I present a case of a single mom who came to me thinking that her son had ADHD. She was in the movie industry and traveled a lot, and there was this pattern of unpredictable availability that was mostly driven by her profession and how family-unfriendly it is. Often professions are very family-unfriendly; they require a lot of travel, they require sudden departures, prolonged separations away from home. So something as seemingly innocuous as a parent’s profession might result in sudden, prolonged separations that can create a symptomatic child, where that child acts up.

As the saying goes, negative attention is better than no attention at all; so some children will learn a pattern of acting up, acting out, in ways that draw parents physically closer to them, and at one level, it’s irrelevant whether that parent is loving them or hating them in the moment. There’s no calmer child than in the principal’s office when a parent meeting has been called after a child has been busted for smoking off campus or something like that. Often it’s the adults who are tearing their hair out, and it’s the child who’s the most calm. And maybe that’s a child who, for whatever reason, has a parent or two parents who are preoccupied with their careers or marital relationship, and the child is an afterthought—not because they’re malicious parents, but because life’s circumstances are weighing heavily on them, and all of a sudden that child is calm because Mom and Dad are around. It’s about just having Mom and Dad around.

GS Besides what we’ve talked about so far, you also bring up gender differences as a factor that can lead to overdiagnosis—for ADHD as well as autism. Why are diagnoses so much higher for boys than for girls?

EG The latest statistics show that boys are about three times more likely to be ascribed an ADHD diagnosis than girls. One of the reasons is that during the younger years we underappreciate gender differences in what’s called self-regulation. There’s research showing that in preschool and kindergarten years the average boy is about a year behind the average girl in terms of self-regulatory capacities; that’s just a fancy term for being able to sit without being wiggly and fidgety, to wait your turn, keep from blurting out answers before you’re called on, remember what you were just told, follow directions—all of which I would consider to be normal, maturational childhood phenomena that also happen to link up with ADHD symptoms. Everything I just listed there is an ADHD symptom, but it’s also a self-regulatory capacity that every child has to acquire. For boys, it’s more difficult to acquire than for girls—in the younger years.

GS I know you’re not making blanket statements: “all boys” or “all girls,” because there are those boys who are more capable of self-regulation and those girls who are less so, right?

EG Yes. And the younger we assess children and ascribe an ADHD diagnosis, the greater the risk for misdiagnosis. The latest statistics out of the Centers for Disease Control point out that the median age when ADHD is diagnosed right now is six; so about half of kids diagnosed with ADHD are six or younger, which actually stunned me. It’s most pronounced, I would argue, when it comes to autism spectrum disorder. One of the unintended consequences of the early detection screening and treatment movement—the “catch ’em young” movement—is that there’s been a massive overdiagnosis of autism spectrum disorder in terms of the mild cases. So the younger we assess children, the more likely it is that those who are slow to mature, who engage in gender-specific behavior (and I’ll get back to that), those who are struggling, will be misdiagnosed. And that especially applies to boys. Here are my arguments: About one in 54 boys right now is considered to be autistic; that’s about five times the rate for girls. The average at which autism spectrum disorder is diagnosed in the United States right now is about age three. It’s during those toddler years that I would argue there is the most diagnostic uncertainty, and I think it especially comes into play around gender differences. It’s not until about age five that boys develop what’s called a theory of mind, a lack of which is associated with autism. It’s just a fancy term for being able to infer from another child’s behavior what their intentions are, what their motives are, where they’re coming from emotionally. Girls, at age three to four, are about twice as capable as boys of doing that.

GS To identify with the other child being a different person and possibly thinking differently than you do.

EG There you go: mind-reading. What might he be thinking, what might she be conveying through her behavior, through a certain facial expression, and taking that in as social feedback through which to modify or modulate your own behavior.

So that’s one definition for a theory of mind. At age three to four, girls are about twice as capable as boys of doing that, and it’s not until about age five that they draw even. So unless you understand that, it becomes very confusing to differentiate between a masculine-identified boy versus a mild case of autism spectrum disorder if you add it to other things. For instance, boys don’t engage in affiliative play at the same rate as girls until about age two—which is seeking out mutually pleasurable play experiences with peers. You could see that as an autistic-like phenomenon. Toddlerhood is also when repetitive behaviors are relied on heavily to develop fine and gross motor mastery. So your boy who is stacking blocks over and over and over again—repetitively so—might not be engaged in autistic behavior but in a traditional, developmentally appropriate means to acquiring fine motor mastery. And he doesn’t want to be torn away from it and may have a small tantrum if he is and is not given multiple warnings. You can have a toddler, then, who doesn’t respond to his name being called, doesn’t look up when his name is being called, doesn’t look when Mom or Dad or someone else is pointing to something else that they want him to look at.

When it comes to empathy, there’s a great book by Simon Baron-Cohen called The Essential Difference. He looks at the “extreme male brain” theory of autism, and I’m a complete advocate of that because I see it every day in my office. He makes the argument that the male brain is a systematizing brain (on average) compared to the female brain, which is more of an empathic brain. He draws upon massive amounts of research showing these gender differences in terms of empathy. By and large, boys are less empathic than girls; they’re not as tuned-in emotionally, and they’re not reading faces for signs of how they’re coming across.

Boys tend to be more egoistic in their communication style. When they’re around other kids who share their interest, they may go on and on about a technical interest that they’re turned on by, not necessarily picking their heads up to look around to see if they should stop talking and start listening.

So for all of the reasons that I’ve just identified, it becomes extremely difficult to tease apart what is a mild form of autism or a young toddler male behaving in a traditional masculine way.

GS So are there mild cases of the diagnoses you write about?

EG My own position? No. And this is where I draw the line (it’s kind of absurd for me to be saying this): We Americans like to think of ourselves as living in a diverse society where we’re accepting of people of all races and colors and sexual orientations, but I think we are very discriminatory in terms of human difference. I think the British are far more tolerant of people’s eccentricities. In the United States we pathologize human variance, or people who are outside the norm in terms of their behavior, their temperament. A lot of children exist outside the average bandwidth in terms of their behavior or temperament—they may be quirky, difficult, a little strange—and so we label them as having mild cases of these disorders.

GS So if your child has been diagnosed with a “mild form” of any of these, you might want a second opinion?

EG Absolutely.