The Pitfalls of Early Screening for Autism
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Pulling no punches, Dr. Jose Cordero, the founding director of the National Center on Birth Defects and Developmental Disabilities recently went on record about the dire need to screen for autism at younger ages: "For healthcare providers, we have a message that's pretty direct about autism. And the message is: The 4-year-old with autism was once a 3-year-old with autism, which was once a 2-year-old with autism."
On the face of it, promoting early autism screenings is a nothing short of a public health imperative. The science is stacking up to show that catching and treating autism earlier leads to better outcomes. Dr. Laura Schreibman, who directs the Autism Intervention Research Program at the University of California, San Diego last year told American Psychological Association’s Monitor Magazine columnist Eve Glicksman: “Psychologists need to advise parents that the ‘wait-and-see’ approach is not appropriate when autism is expected. Delaying a diagnosis can mean giving up significant gains of intervention that have been demonstrated before age 6.”
What neither parents nor many doctors realize is that the younger the age at which we assess for problems, the greater the potential a slow-to-mature kid will be given a false diagnosis. In fact, as we screen ever younger children for autism, we need to be reminded that the period of greatest diagnostic uncertainty is probably toddlerhood. A 2007 study out of the University of North Carolina at Chapel Hill found that over 30 percent of children diagnosed as autistic at age two no longer fit the diagnosis at age four. Based on both my direct clinical experience working with children, and my reading of the data, Dr. Cordero’s statement greatly oversimplifies the issue.
Let’s be realistic. The likelihood that a slow-to-mature toddler will be misperceived as severely autistic is slim. On the extreme end, autism is, more often than not, a conspicuous, lifelong, disabling neurological condition. Roy Richard Grinker, in his acclaimed book Unstrange Minds, masterfully documents the challenges he faced raising Isabel, his daughter with pronounced autism. At age two, she only made passing eye contact, rarely initiated interactions, and had trouble responding to her name in a consistent fashion. Her play often took the form of rote activities such as drawing the same picture repeatedly, or rewinding a DVD to watch identical film clips over and over. Unless awakened each morning with the same greeting, “Get up! Get up!” Isabel became quite agitated. She also tended to be very literal and concrete in her language comprehension: expressions like ‘I’m so tired I could die” left her apprehensive about actual death. By age five, Isabel remained almost completely nonverbal.
When the signs of autistic spectrum disorder are indisputable, as in Isabel’s case, early detection and intervention are crucial to bolster verbal communication and social skills. The brain is simply more malleable when children are young. Isabel’s story in Unstrange Minds is a heroic testament to the strides a child can make when afforded the right interventions at the right time.
Diagnostic conundrums enter the picture when we frame autism as a spectrum disorder, (as it is now officially designated in the newly minted Diagnostic and Statistical Manual 5 th Edition) and try to draw a bold line between a struggling toddler and one on the mild end of the spectrum. What is a doctor to make of a chatty, intellectually advanced three-year-old patient presenting with a hodge-podge of issues, such as poor eye contact, clumsiness, difficulties transitioning, overactivity or underactivity, tantrumming, picky eating, quirky interests, and social awkwardness? Does this presentation indicate mild autism? Or, does it speak to a combination of off-beat developmental events and difficult personality traits, resulting in an inflammatory parent-child relationship and a struggling kid?