Mapping the futures of autistic children

Published by: Spectrum
Written by: Elizabeth Svoboda

Kimberlee McCafferty knew something was different about her son Justin when he was just a baby. He had stopped babbling around his first birthday. He rarely accepted the food she offered or interacted with others, and his favorite pastime was spinning his toys across the wood floor. Before he turned 2, Justin was diagnosed with autism.

The diagnosis sent McCafferty, of Brick, New Jersey, on the kind of medical odyssey familiar to many parents: batteries of behavioral tests, dietary changes and a menu of therapy options. A few months into this journey, an autism specialist at Georgetown University in Washington, D.C., examined Justin, who is now 18, and rendered a sweeping judgment about his future. “Your child will never speak or live independently,” the doctor told McCafferty flat out. His words dropped like an anvil, leaving McCafferty shaken. “I remember thinking, ‘That’s a pretty damning statement to make when the child is not yet potty trained.’”

Specialists say families are right to be skeptical of such point-blank verdicts. The business of making such forecasts in young children is fraught, especially because some children defy them in unexpected ways. “We see huge variability in how symptoms progress,” says So Hyun “Sophy” Kim, assistant professor of psychology in clinical psychiatry at Weill Cornell Medicine in New York City. “It’s not always easy to predict what’s going to happen down the road.”

Yet researchers have assembled a rich body of data about how autistic people do over time and can provide certain kinds of nuanced projections. The work points to several broad life trajectories for autistic children — rough sketches of how a child’s adolescence and adulthood may unfold. The data also point to subtle, early behavioral markers of future growth or difficulties in specific areas, as well as genetic variants that affect the arc of a child’s trajectory. Some of the research could help clinicians gauge an autistic child’s risk of having mental health challenges such as anxiety and depression as well. Click here to read the rest of the story

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