As the number of children with autism increases nationwide, the need for effective and consistent clinical diagnosis is growing. A statewide committee recently published new guidelines designed to ensure health professionals, educators, parents, and all involved in diagnosing a child with autism are using proven and consistent practices.
The guidelines stress, among other things, that effective autism diagnosis and treatment requires a collaborative approach.
Mary Beth Bruder, a professor in UConn's Neag School of Education and in the UConn School of Medicine, was co-chair of the committee, which spent four years developing the "Connecticut Guidelines for a Clinical Diagnosis of Autism Spectrum Disorder."
"Diagnosing autism doesn't require a snapshot, it requires a comprehensive, interdisciplinary look at the child," says Bruder, who heads a doctoral program in early childhood intervention in the Department of Educational Psychology and is director of UConn's A.J. Pappanikou Center for Excellence in Developmental Disabilities Research, Education, and Service. "Physicians, educators, social workers, and speech pathologists are among the many professionals that should be involved in first the diagnosis, and then the treatment of a child with autism. A complete picture is required. And parents play a crucial role."
Laura Kern, a third-year doctoral student in educational psychology at the Neag School, is both the mother of a 9-year-old son with autism and one of the parents involved in providing the data and insights needed to craft the new guidelines. She says one of the things she learned during her son's diagnosis is that as many as 51 percent of parents report dissatisfaction at the lack of continuity in the process. The new Connecticut guidelines provide a step-by-step, interdisciplinary guide.
"The guidelines address parents' concerns in a systematic way, and if you approach a diagnosis systematically, you're more likely to reach needed services and early interventions more effectively and efficiently," Kern says. "It was incredible to be part of the process of creating the guidelines, and to see so many different state agencies, parents, and professionals come together to create a united message about what a good diagnosis should look like."
Funded with an $86,000 grant from the U.S. Centers for Disease Control and Prevention (CDC), the guidelines are the result of a collaboration among members of the Connecticut Act Early Project, a partnership that includes experts from a wide range of leading childhood health and disabilities agencies, including the National Center on Birth Defects and Developmental Disabilities.
Bruder says Act Early Connecticut is now pursing the funding needed to educate and train all state professionals involved in autism diagnoses on the best practices included in the guidelines.
The rising number of children with autism makes this extremely important work, she notes.
The CDC estimates that as many as 1 in 88 children have a form of autism, which can range from mildly impaired social skills to severe cognitive and behavioral problems. This statistic, released in 2012, represents a 23 percent increase from data collected in 2009, and illustrates well the growing and urgent need for effective diagnosis, Bruder says.
"Scientists are working very hard to determine why this increase is happening," she adds, "but essential to the process is consistency in how these diagnoses are being made. Autism affects every aspect of a child's life, so it only makes sense to have people from each of those areas involved in realizing the positive outcomes that can come from appropriate and early interventions."