Winter 2004 Volume 16, Number 2	Catching Them Young Expert Rebecca Landa believes we can spot autism earlier. She's probably right.
	We know people were trying to shelter us from what we felt to be true, that something was seriously wrong with our son, but they did us no favor," Kim Fleming told a recent meeting of Hopkins psychiatrists. She and husband, Bruce, were asked to talk in part because their situation so clearly reflects the truth, lack of knowledge and the glimmers of optimism that swirl around autism diagnosis today.
The Flemings barely knew the word autism when their son Grant was born five years ago. They've since been through fire and rain in getting a timely diagnosis and starting his treatment. "If I heard, 'Don't worry, boys are a little slow' one more time, I thought I'd bite someone," says Kim, later. Grant's babbling was odd at 9 months. He rarely looked at either parent. "We thought he might be deaf." Confirmation of autism, however, didn't come until he was 2 1/2. Most don't get it until they're 3. Yet though misguided intentions can delay diagnosis, most of the waffling stems from ignorance, says clinician Rebecca Landa, Ph.D., who directs Kennedy Krieger Institute's Center for Autism and Related Disorders. Landa, also on Hopkins' psychiatry faculty, presented research at the same meeting. "Right now, nobody knows enough about the early months to winnow out 'slow' kids from those with true autism spectrum disorders (ASD)," she explains. But that's sure to change because of efforts-the first of their kind-she and colleagues are making. Landa leads the Infant Development Study, now a major, NIH-sponsored harvest of data that should shed an earlier light on children with ASD-the umbrella term for autism, Asperger syndrome and a more general type of pervasive developmental disability. Totaling 300 children, the study follows three groups: siblings of ASD patients who face higher risk of spectrum disorders-like Grant's younger sister Allison-children with no family history of developmental troubles and, more recently, kids who are late to talk. Center staff evaluate them with a battery of tests at 6 months (except the late-talkers), 14, 24 and 36 months. "We're the first to look at autism prospectively," says Landa. She began the study almost as a reflex. Six years ago, she'd been working with school-age kids, trying to pinpoint language deficits and strengths. But then, provocative finds in neurobiology hit the ASD journals. Signs that cerebellar neurons were both sparse and structurally "pruned" before birth, for example, or that newborns destined for autism showed abnormal blood chemistry pointed to the disorders' far earlier beginnings. "I'm looking at 12-year-olds?" Landa questioned. "I should be looking at 12-month-olds!" So Landa turned to the infants. Her team has focused on the little ones' abilities to communicate or connect socially-things that can act as temporary red flags in children who later come out fine or that, in ASD, usually go awry long-term. The study also probes behaviors that tattle on more basic brain function. They're the sensory or motor or cognitive abilities that suggest affected brain areas. "The world is trained to look for first words, first steps," says Landa. "But catching subtle things like gestures or how a child integrates gaze, communication and positive affect? They're difficult to notice unless you know to look. Ultimately, we'll learn what to watch for in babies. We'll not only predict ASD but will get a feel, early on, for its severity." Especially important, the study should also shed light on how cognitive thought, social behavior and language support each other-or don't-in the oh-so-plastic developing postnatal brain. How the three interact isn't well-understood even for non-disabled children. An example of how research could fit in, Landa says, is with a property called joint attention. "Say a toddler's playing in a room where I am, and does something cool with a toy. He'll look up to see if I caught what he did. We share the moment. He's monitored me and makes suppositions about what I'm thinking. "There's a body of work that says if kids don't first have good joint attention skills, their vocabulary won't be good. Supposedly, it's a hard-and-fast precursor to language development. But we've found children in our study who have reasonable joint attention skills yet have no language! And vice versa!" What makes that more than an esoteric little tidbit, says Landa, is that it's forced her to realize that a social skill has ties to higher thought and language. "Joint attention carries information about ability to infer what's going on in someone's mind-a social-cognitive implication, the seeds of which may be important in acquiring more language. "It also has treatment implications. If we find out you need certain joint attention skills before you can say more than a few words, there'll never be another kid I see who won't practice them!" The study's first results, now in publication, look at a single property-general development as measured with the Mullen Scales of Early Learning, a standard yardstick. "We found that at 6 months, children with autism don't look much different, in terms of general development, from other kids," Landa says. "But by 14 months, something is clearly not right in three-fourths of them, primarily in language. By 24 months, the discrepancy's even greater." Such results-even this early in the study-give "permission" to treat children sooner. "If both you and your doctor see a child about whom you're concerned at 14 months, don't wait! You could alarm parents for no reason, people say. But I'd rather start a child on tailored therapy and have parents uneasy a few months," Landa declares. "Then if things are OK, it does no harm." The Flemings already see benefit in that. When daughter Allison was 1 month old, they had her wait-listed for evaluation. Now that Allison's 2-and is enrolled in Landa's study-it's clear she has autism. "This time, though, we didn't sit around," says Kim. "Allison has had help from the first, and she's at a much higher level than Grant at that age. Her eye contact's easier to get. She responds to training more quickly. A few weeks ago, when she grabbed her plastic telephone and pretended to talk on it, my heart was in my throat." For more information, call toll free 1-877-850-3372.