A magazine for friends of the Warren Alpert Medical School of Brown University.

Delayed Diagnosis

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Study findings suggest that girls with autism are diagnosed later than boys.

Two of the most effective treatment strategies for autism are early diagnosis and intensive services. But a new study analyzing the first 1,000 participants in the Rhode Island Consortium for Autism Research and Treatment (RI-CART) had some concerning findings: girls with autism receive a diagnosis, on average, nearly 1.5 years later than boys.

This is likely because parents and clinicians tend to notice language delays as the first sign of autism, and girls in the study exhibited more advanced language abili-ties compared to boys, say study authors Stephen Sheinkopf, PhD, and Eric Morrow, MD, PhD. The study was published in Autism Research in January. Autism is far more common in boys; this study found more than four times  as many boys as girls with autism. That girls are diagnosed later is clinically important, says Morrow, the Mencoff Family Associate Professor of Biology.

“If we’re identifying girls later, that may delay their treatments,” he says. Sheinkopf, an associate professor of psychiatry and human behavior and of pediatrics, stresses the importance of early diagnosis.

“We need to think about how we can improve recognition of autism in individu-als—including many of these girls—who don’t have the same level of primary language delay but may have other difficulties in social communication, social play, and adapting to the social world,” he says.

RI-CART represents a partnership between researchers at Brown, Bradley Hospital, and Women & Infants Hospital that also involves nearly every site of service for families affected by autism in Rhode Island. The study enrolled more than 20 percent of pediatric-age individuals with
autism in Rhode Island. The other major finding of the study was that people with autism frequently exhibit other psychiatric and medical conditions, such as an intellectual disability or epilepsy.

“These co-occurring conditions need also to be a focus of treatment for patients,” Morrow says. Sheinkopf and Morrow, who lead the Autism Initiative at the Hassenfeld Child Health Innovation Institute at Brown, say they hope the RI-CART registry will lead to more studies that will improve the lives of people with autism and their families, particularly because the cohort involves participants up to age 64. “The field really needs to focus on longitudinal studies,” Morrow says. “I think we’re going to learn even more when we follow children from a very young age as they develop, including into adulthood.”

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