The recent recommendations by the nation’s top pediatricians association to screen all infants for autism spectrum disorders (ASD) has been largely hailed as a necessary step in ensuring that children with a disorder are identified and treated early. At the same time, it has raised questions, even among proponents of guidelines, about the potential downsides of widespread screening for ASD and other childhood neuropsychiatric disorders.
The guidelines released in October by the American Academy of Pediatrics, which are meant to standardize screening for autism spectrum disorders during regular checkups, have put the spotlight on autism, but some of the issues surrounding childhood screening extend to other developmental and psychiatric conditions as well, including depression and anxiety disorders. Each of these poses a unique set of challenges based on the attributes of the condition, the age of the children affected, and societal views and perceptions.
“The issues vary incredibly by disorder,” says Judy Rapoport, chief of the child psychiatry section at the National Institute of Mental Health. “One really has to look at each disorder on a case-by-case basis.”
Still, she and others say, there are some commonalities. Prominent among them is the fear of “overdiagnosis”— that children on the margins of normal behavior might be erroneously pulled into an ever-broadening net cast by physicians trying to catch problems early. The dangers of overdiagnosis include the potential for stigmatization and inappropriate use of health care resources that are already in short supply.
In the case of autism, says Paul Lipkin, a developmental pediatrician at Baltimore’s Kennedy Krieger Institute who chaired the committee that drafted the American Academy of Pediatrics guidelines, “I think pediatricians and other child health professionals are concerned about overdiagnosing children and about families being given misinformation about their child’s problem or being told their child has something worse than what may be true.
“I have no doubt that we’re probably going to end up dealing with a swinging pendulum, going from underreferral back in the other direction to overreferral [of children with suspected autism],” Lipkin says.
A False Epidemic?
As it is, autism cases seem to have exploded in recent years, leading to headlines warning of an “epidemic” of the disorder. The Centers for Disease Control and Prevention estimate that one in about 150 children has an autism spectrum disorder, whereas in 2000 the prevalence was about one in 500. Such statistics can be misleading, however, because the accepted diagnostic criteria for autism spectrum disorders were significantly broadened during that period.
“We don’t quite know yet whether there is really an increased occurrence or whether it’s related to the broadening of the definition and sensitizing of professionals and families about these disorders. That still remains uncertain,” says Lipkin. “But there is no doubt that we’re identifying it more commonly than we ever had been.”
Richard Friedman, a child psychiatrist at Weill Cornell Medical College in New York agrees that overdiagnosis is a valid concern but says it needs to be put into perspective.
“People tend to get alarmed whenever there is a dramatic increase in the detection of a particular psychiatric problem,” Friedman says. “They ask whether we are truly uncovering illness that is out there in the population, or are we simply creating it because we are using screening instruments that are so sensitive that we’re pathologizing normal behavior.
“I see what people are afraid of, and I share it. But if you look at the epidemiology of psychiatric disorders in children, it’s alarming: Even severe cases are underrecognized and undertreated. To my mind, the more alarming truth is that kids who have potentially treatable and life-threatening illnesses go unrecognized and untreated.”
Long Waits, Anxious Parents
As a specialist in neurodevelopmental disabilities, Lipkin is the kind of specialist to whom general pediatricians refer children they suspect might have a problem. Such specialists are rare; already, he says, an inadequate number of professionals are available to identify and treat children with autism spectrum disorders, leading to long waiting lists for evaluation—more than a year in many cases.
He tells of a 4-year-old he had just seen in his practice, whose parents were concerned about autism or Asperger’s and who had been referred to him by a pediatrician. After a complete evaluation, Lipkin determined that the child was having only mild problems that did not begin to approach anything along the broad spectrum of autistic disorders. The case illustrates the double-edged sword of the sensitization of society to autism, Lipkin notes.
“On the one hand, the parents and the pediatrician were sensitized to these types of concerns and got the child in for a more detailed evaluation, which ultimately gave them information that enabled the parents to better understand their child and go forward,” he says. “On the other hand, until they in fact could get their child seen by a specialist, they lingered with all this doubt and question and worry that may have been uncalled for.”
Lipkin and others say stigmatization is a concern as well. “I do worry a little bit about it, and that families will perceive their child as being very different in some way when in fact they have something that is very mild,” he says. “It’s not enough to just do the screening and then refer, which has been one of the problems in pediatric practice. We have to know how to break this kind of news and help families with the information, especially because it’s ambiguous information until the child has a full evaluation.”
‘Stigma Doesn’t Kill’
Concerns about stigma also complicate screening of adolescents for depression and anxiety disorders, says Friedman, who authored a commentary in the New England Journal of Medicine in 2006 calling for universal screening of teenagers for depression. The article was prompted in part by “the controversy that erupted about the feasibility and ethics of screening teens and adolescents in public schools,” he said in an interview.
One argument against screening teens, he says, is that the screening questionnaire may be so sensitive that it picks up a lot of clinically irrelevant issues. “Then you’re going to end up alarming the kids and the parents that the kid has a serious problem, and you’re going to stigmatize them and upset them and all that.”
Such concerns are valid, he says, to a point: “You have to ask yourself what’s worse: to temporarily upset somebody and then eventually console them … or fail to do that and have a kid who goes undetected and kills himself.” Suicide, he points out, is the second- or third-leading cause of death in teenagers, according to various surveys. “Stigma doesn’t kill,” Friedman says. “But untreated psychiatric illness can kill, and untreated depression can certainly kill.”