Book Review: Mild Autism? Or Something Else?
Back to Normal: Why Ordinary Childhood Behavior Is Mistaken for ADHD, Bipolar Disorder, and Autism Spectrum Disorder
Enrico Gnaulati, PhD. 2013. Beacon Press, Boston. 239 pages.
March 9, 2014—If you have a child with serious forms of autism, with ADHD, or with bipolar disorder, you know what a struggle it can be to secure his or her wellbeing in a society that doesn’t go out of its way for those who are atypical. You know how real your child’s diagnosis is; and how meaningless it could become if it became “watered down,” so to speak, by being mistakenly assigned to children who may, in fact, have very different challenges.
In the same vein, if you have a child who has been diagnosed with one of these disorders in error, would you want to spend thousands of dollars and a large portion of your family’s time and effort pursuing interventions that are hurting more than helping?
Unfortunately, when faced with a potential diagnosis—whether a formal diagnosis offered by a qualified professional or an armchair diagnosis offered by another adult in your child’s life—it can be very difficult for us as parents to judge its potential validity. Is our child one of those who really fit the criteria for the diagnosis? Or is the assessment missing something? And does it really matter if we get the diagnosis right, as long as we find an intervention or medication that seems to make a difference?
According to Los Angeles clinical psychologist Enrico Gnaulati, assessments often are missing something. And it does matter—much more than even some professionals may think.
In his own practice, Gnaulati was frequently struck by how differently parents and teachers described the same child. Indeed, he points out, researchers report that this is a common phenomenon. However, they also report that when pediatricians are careful to follow the “best practices” guideline of consulting at least two informants when assessing ADHD, for instance, the number of true cases shrinks “by up to 40 percent.” Unfortunately, say other researchers, this best practices mandate is followed by only about 20 to 30 percent of pediatricians.
As children continually turned up in Gnaulati’s office with labels that didn’t seem to fit, he says he began to feel ethically compelled to help parents protect their children from the potential harm that could result from mistaking these diagnoses. Thus, the logical next step for Gnaulati was his 2013 book Back to Normal: Why Ordinary Childhood Behavior Is Mistaken for ADHD, Bipolar Disorder, and Autism Spectrum Disorder.
The book’s title may lead some parents to assume that Gnaulati doesn’t believe these childhood disorders exist, but nothing could be further from the truth. He describes himself as someone who is willing and able to go into “high gear” when there is unquestionable evidence of a disorder requiring rigorous interventions and medication. Yet, he says, “there are good reasons to be cautious when it comes to these diagnoses.”
One reason concerns the stigma that is still attached to mental health diagnoses. Despite the fact that—on the surface, at least—society seems to have little compunction about casually applying these labels, “unfortunately,” says Gnaulati, “studies show that the average American still harbors negative stereotypes about kids and teens with psychiatric disorders. Large swaths of the American public still believe that a depressed teenager is a would-be violent teenager.” Further, he says, childhood labels often come back to haunt people in adulthood, shutting them out of certain careers and raising costs in terms of life and disability insurance rates. The self-fulfilling prophecies that can be sparked from negative stereotypes about certain disorders may also place them at a disadvantage.
And then there are the potential side effects of prescribing powerful brain-altering medications to children who are still in crucial developmental phases—medications that in many cases have not been approved for use in children. “Most large-profit-margin psychiatric drugs are approved by the FDA strictly for use with adults, not kids,” writes Gnaulati. “However, doctors are allowed to use their discretion and prescribe them to kids for ‘off-label’ purposes.” In other words, he says, psychiatrists (who—unlike psychologists—are MDs) are allowed to use their “medical instincts” to decide whether a drug intended for adults might also be helpful for a child, even in the absence of any research evidence to support these instincts.
And so, Gnaulati observes, “meds for kids are big business and highly profitable.” In fact, as recently as 2011, a study published in the Journal of Marital and Family Therapy, estimated almost eight million American kids to be on at least one psychiatric drug.
Given this lucrative market, it’s no wonder some of the bands have been loosened on how childhood disorders are defined—and this is where Gnaulati turns his attention as he examines the blurred lines between “mild” versions of childhood disorders and what he calls “normal childhood behavior.”
Of course, he acknowledges, “normal” may mean different things to different people. Certain behaviors are understandable, typical reactions to stressful life events. Sometimes problem behaviors simply indicate a lack of maturity in a certain skill area. Some behaviors that seem perfectly acceptable at home stand out in a classroom situation where children are expected to sit still for extended periods and raise their hand before saying anything.
The upshot is that an unwanted behavior may nevertheless be in the typical range, rather than being a symptom of a mental disorder. Unfortunately, says Gnaulati, as the lines blur between behavior problems and mental health symptoms, we create “mild” versions of disorders that, in their true form, are very debilitating. The net effect is that we unnecessarily label some children while simultaneously minimizing the suffering of those children who really need that label, and for whom it needs to retain its serious meaning.
Take manic behavior, for instance. Gnaulati says that when he sees mania in his practice, it’s unmistakable. “The manic person hasn’t slept for days, believes he or she has inexhaustible energy and superhuman abilities, and most prominently of all, talks a blue streak.” Unfortunately, he says, manic behavior has now been redefined in kids as “irritability, severe tantrums, and rapid mood swings.” This has led to a massive increase in kids being diagnosed with bipolar disorder. (Could something as simple as sleep-deprivation reasonably explain irritability, tantrums and mood swings in a child?) Interestingly, it was a medical professional at Harvard University’s teaching hospital who is credited with having redefined manic behavior in children. He was later disciplined by Harvard for having violated conflict of interest policies. According to one news report, a senate investigation found he had received more than $1.6 million in speaking and consulting fees from makers of anti-psychotic medications that are prescribed to children who are thought to have bipolar disorder.
This is only one of many pieces to the complex overdiagnosis puzzle, and to fill in the picture a little more completely for us, Gnaulati goes into careful detail about some of the factors that cause misdiagnosis for mild forms of autism. A number of these have to do with the slow-to-mature developmental trajectory that is normal for boys—who are diagnosed with autism at five times the rate of girls.
Clearly, parents need to have confidence in childhood diagnoses so they can advocate for their children effectively. They also need crucial information about children’s emotional development if they are to weigh the benefits and risks as they make decisions about the interventions they are offered. Gnaulati’s book addresses both needs well, gathering this information in one place, in an easy-to-digest form. While his arguments are well supported by peer-reviewed research, Gnaulati’s approach is seasoned by a healthy dose of common sense and substantial clinical experience. And his last chapter even includes some tips for parenting challenging kids and fostering positive behaviors.
Gnaulati probably hasn’t covered everything parents might like to know about childhood disorders, but Back to Normal certainly offers more than enough to give them the capacity to ask the right questions of the teachers and professionals in their child’s life. And as anyone with a special-needs child knows, that is one of the most important tools in a parent’s arsenal.
Are there really so many children with "mild forms" of ADHD, Bipolar Disorder . . . even Autism? Or could we be pathologizing ordinary childhood behavior? In this video interview, Dr. Enrico Gnaulati shares what he sees in his clinical practice.?