With rates of the disorder yet again rising according to new CDC numbers, a look at how doctors are diagnosing autism spectrum disorder in children, and what might be done better.
Rates of autism spectrum disorder (ASD) are not creeping up so much as leaping up. New numbers just released by the Centers for Disease Control and Prevention reveal that one in 68 children now has a diagnosis of ASD—a 30 percent increase in just two years. In 2002, about one in 150 children was considered autistic and in 1991 the figure was one in 500.
The science stacks up in favor of catching and treating ASD earlier because it leads to better outcomes. Dr. Laura Schreibman, who directs the Autism Intervention Research Program at the University of California, San Diego embodies the perspective of most experts when she says, “Psychologists need to advise parents that the ‘wait-and-see’ approach is not appropriate when ASD is expected. Delaying a diagnosis can mean giving up significant gains of intervention that have been demonstrated before age six.”
There is a universal push to screen for ASD at as young an age as possible and growing confidence that the early signs are clear and convincing. Dr. Jose Cordero, the founding director of the National Center on Birth Defects and Developmental Disabilities conveys this fervor.
"For healthcare providers, we have a message that's pretty direct about ASD. 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."
Many researchers are now on the hunt for atypical behaviors cropping up in infancy that could be telltale signs of ASD. For instance, a team of experts led by Dr. Karen Pierce at the Autism Center of Excellence at the University of California, San Diego, has used eye-tracking technology to determine that infants as young as 14 months who later were diagnosed as autistic showed a preference for looking at movies of geometric shapes over movies of children dancing and doing yoga. This predilection for being engaged by objects rather than "social" images is thought to be a marker for autism.
Even the quality of infants' crying has come under scientific scrutiny as a possible sign of the disorder. Dr. Stephen Sheinkopf and some colleagues at Brown University compared the cries of a group of babies at risk for autism (due to having an autistic sibling) to typically developing babies using cutting-edge acoustic technology. They discovered that the at-risk babies emit higher-pitched cries that are "low in voicing," which is a term for cries that are sharper and reflect tense vocal chords. Dr. Sheinkopf, however, cautioned parents against over-scrutinizing their babies' cries since the distinctions were picked up by sophisticated acoustic technology, not by careful human listening.
"We definitely don't want parents to be anxiously listening to their babies' cries. It's unclear if the human ear is sensitive enough to detect this."
What gets lost in the debate is an awareness of how the younger in age we assess for problems, the greater the potential a slow-to-mature kid will be given a false diagnosis. In fact, as we venture into more tender years to screen 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. Since ASD is still generally considered to be a life-long neuropsychiatric condition that is not shed as childhood unfolds, we have to wonder if a large percentage of toddlers get a diagnosis that is of questionable applicability in the first place.
The parallels between a slow-to-mature toddler and a would-be-mildly- autistic one are so striking that the prospect of a false diagnosis is great. Let's start with late talkers. Almost one in five 2-year-olds are late talkers. They fall below the expected 50-word expressive vocabulary threshold and appear incapable of stringing together two- and three-word phrases.
Data out of the famed Yale Study Center have demonstrated that toddlers with delayed language development are almost identical to their autistic spectrum disordered counterparts in their use of eye contact to gauge social interactions, the range of sounds and words they produce, and the emotional give-and-take they are capable of. Many tots are in an ASD red-zone who simply don't meet standard benchmarks for how quickly language should be acquired and social interactions mastered.
Expanding autistic phenomena to include picky eating and tantrums can create more befuddlement when applied to small children. Several years ago a study published in the Journal of the American Dietetic Association tracking over 3,000 families found that 50 percent of toddlers are considered picky eaters by their caregivers. The percentage of young children in the U.S. who are picky eaters and have poor appetites is so high that experts writing in the journalPediatrics in 2007 remarked, " … it could reasonably be said that eating-behavior problems are a normal feature of toddler life."
Tantrums also are surprisingly frequent and intense during the toddler years. Dr. Gina Mireault, a behavioral scientist at Johnson State College in Vermont, studied kids from three separate local preschools. She discerned that toddlers tantrumed, on average, once every few days. Almost a third of the parents surveyed experienced their offsprings' tantrums as distressing or disturbing.
Too much isolated play, manipulating objects in concrete ways, can also elicit autism concerns. But, relative to young girls, young boys are slower to gravitate toward pretend play that is socially oriented. In a French study of preschoolers’ outdoor nursery play published in PLoS One in 2011, the lead investigator Stéphanie Barbu concluded, “ … preschool boys played alone more frequently than preschool girls. This difference was especially marked at 3-4 years.”
This is significant, since there is a strong movement to detect autistic spectrum disorder earlier, with the median age of diagnosis now falling between ages 3 and 4. Boys’ more solitary style of play during these tender years, without gender-informed observation, can make them appear disordered, rather than different.
Parents and educators shouldn’t assume the worst when male toddlers play alone. Many little boys are satisfied engaging in solitary play, or playing quietly alongside someone else, lining up toys trains, stacking blocks, or pursuing any range of sensorimotor activities, more mesmerized by objects than fellow flesh-and-blood kids. According to Dr. Barbu, it’s not until about age four or five that boys are involved in associative play to the same extent as girls. That’s the kind of play where there’s verbal interaction, and give-and-take exchanges of toys and ideas—or, non-autistic-like play.
It is commonly believed that autism spectrum kids lack a “theory of mind.” I’ll provide a layman’s definition of this term first, by a layman. Josh Clark, a senior writer at HowStuffWorks.com, provides a fine, no-frills definition: “It refers to a person's ability to create theories about others' minds—what they may be thinking, how they may be feeling, what they may do next. We are able to make these assumptions easily, without even recognizing that we are doing something fundamentally amazing.”
It’s this very ability to “mind read,” or understand that others have thoughts, feelings, and intentions different from our own, and use this feedback to be socially tuned in, that is considered a hallmark sign of autism. However, between the ages of three and four the average girl is roughly twice as capable as the average boy at reading minds, and the gap doesn’t markedly close until they reach about age five or older.
That was the conclusion arrived at by Sue Walker, a professor at Queensland University of Technology, Brisbane, Australia, in her 2005 Journal of Genetic Psychology study looking at gender differences in “theory of mind” development in groups of preschoolers. Being mindful of boys’ less mindfulness during the early toddler years needs to be considered to prevent an inappropriate diagnosis of mild ASD.
Faulty fine-motor skills are often seen as part of an autistic profile. Yet, preschool aged boys have been shown to lag behind their female classmates in this domain. A classic study of preschoolers by Drs. Allen Burton and Michael Dancisak out of the University of Minnesota discovered that females in the 3-to 5-year-old range significantly outperform boys at this age in their acquisition of the "tripod" pencil grip. The so-called "tripod" pencil grip, where the thumb is used to stabilize a pencil pressed firmly against the third and forth digits, with the wrist slightly extended, is generally considered by teachers and occupational therapists as the most effective display of fine-motor dexterity when it comes to writing and drawing.
Finger pointing is one of the fundamental ways that young children express and share their interests, as well as manifest curiosity in the outside world. It's scant use is seen as a warning sign of autism. However, researchers at the University of Sussex in England conducted tests at monthly intervals on 8-month-old infants as they emerged into toddlerhood and found that girls learn to point earlier than boys.
Which is all to say that young boys' social-communication approaches, play styles, and pace of fine-motor development leave them living closer to the autistic spectrum than girls. This confound may explain why boys are five times more likely than girls to be ascribed the diagnosis. One in 42 boys are now affected by autism, a ratio that calls into question whether boys' different pace at acquiring social, emotional, and fine-motor skills gets abnormalized.
It's important to not overstate the case. The possibility that a slow-to-mature toddler will be confused as a moderately or 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 bookUnstrange 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 autism 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 5th Edition, the psychiatric handbook used to diagnose it) and try to draw a bold line between a slow-to-mature 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 hodgepodge of issues, such as: poor eye contact, clumsiness, difficulties transitioning, overactivity or underactivity, tantruming, picky eating, quirky interests, and social awkwardness? Does this presentation indicate mild ASD? Or, does it speak to a combination of off-beat developmental events that result in a toddler experiencing transitory stress, who is otherwise normal, in the broad sense?
We entrust our children to professionals like psychiatrists and psychologists to tease apart the delicate distinctions between mild ASD and a slower pace of development. The trained professionals are supposed to know best. But, do they? A pediatrician is the professional who is most likely to be consulted when a child is suspected of having ASD. While most pediatricians are adequately educated and trained to assess for ASD, a good many of them aren't. How many pediatricians who actually call themselves pediatricians have specialized training in pediatric medicine and/or pediatric mental health?
Several years ago, Gary L. Freed, MD, chief of the Division of General Pediatrics at the University of Michigan, initiated a survey of physicians listed as pediatricians on state licensure files in eight states across the United States: Ohio, Wisconsin, Texas, Mississippi, Massachusetts, Maryland, Oregon, and Arizona. According to the survey, 39 percent of state-identified pediatricians hadn't completed a residency in pediatrics. And even for those who had, their training in pediatric mental health was minimal.
Currently, the American Academy of Pediatrics estimates that less than a quarter of pediatricians around the country have specialized training in child mental health beyond what they receive in a general pediatric residency. The latest data examining pediatricians who have launched themselves into practice reveals that 62 percent of them feel that mental health issues were not adequately covered in medical school. These figures hardly inspire widespread confidence as regards relying on pediatricians to accurately diagnose ASD.
This brings me to my own cherished profession: child psychology. What does survey data tell us about the current training of child psychologists that speaks directly to their ability to separate out abnormalcy from normalcy?
Poring over the numbers of a 2010 study out of the University of Hartford in Connecticut, I discovered that 45 percent of graduate students in child psychology had either no exposure to, or had just an introductory-level exposure to, coursework in child/adolescent lifespan development. It is in these classes that emerging child psychologists learn about what is developmentally normal to expect in children.
It would appear that the education and training of a sizable percentage of pediatricians and child psychologists leaves them ill-equipped to tease apart the fine distinction between mild ASD and behaviors that fall within the broad swath of normal childhood development.
When the uptick in ASD numbers was made public by the Centers for Disease Control and Prevention the week before last, Dr. Marshalyn Yeargin-Allsopp, chief of their Developmental Disabilities Branch, said in a press release, "The most important thing for parents to do is to act early when there is a concern about a child's development. If you have a concern about how your child plays, learns, speaks, acts, or moves, take action. Don't wait."
On the one hand, a clarion call of this nature is the push the parents of a child with an unmistakable case of moderate- to severe-ASD (like Isabel above) absolutely need. On the other hand, Dr. Yeagin-Alsopp's remark seems to stoke the very anxiety that haunts the average parent of a slow-to-mature, but otherwise normal kid, edging that parent to transport the kid to a doctor, where there's a good chance that doctor will lack a solid knowledge-template as to what constitutes normal.
Early screening and treatment for ASD must remain a top public health priority, but the numbers make it clear that professionals would benefit from familiarizing and re-familiarizing themselves with the broad range of what is considered normal early childhood development, and with how young boys and girls differ in behaviors that resemble autistic phenomena. Otherwise the ASD numbers will rise, yet again, with a pool of slow-to-mature children being falsely diagnosed.
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