Lonnie Zwaigenbaum has devoted much of his career to understanding how to identify autism as early as possible. Despite his years of experience, Dr. Zwaigenbaum says physicians like himself would do well to seek the insights of a more important group of experts – parents.
"Parents are the experts when it comes to their kids and their observations are really valuable," Dr. Zwaigenbaum says. "In some respects, parents are picking up on differences at six and nine months of age that we have a much harder time seeing in the clinic."
Dr. Zwaigenbaum is the senior author of a new study showing that parents’ early autism-related concerns are not only common – they’re quite reliable. The report appears in the Journal of the American Academy of Child & Adolescent Psychiatry.
Dr. Zwaigenbaum is a principal investigator at the Autism Speaks Autism Treatment Network center at Glenrose Rehabilitation Hospital and the University of Alberta, in Edmonton, Canada. He and other researchers seeing families for this study (Susan Bryson at Dalhousie University and Jessica Brian at Bloorview Research Institute) are also part of the Autism Speaks Baby Siblings Research Consortium.
Over 12 years, the investigators tracked the autism-related concerns of parents seen at their Canadian clinics. This included about 300 families of children ages six months to three years old. Some, but not all, of the families already had an older child diagnosed with autism. Because autism tends to run in families, the younger siblings of children with autism are themselves at higher risk for developing the disorder. In fact, earlier research by the Baby Siblings Research Consortium found that autism develops in one out of five "baby sibs." That's dramatically higher than the estimated prevalence of 1 in 66 in the general population.
At three years of age, all of the children in the study were assessed for autism. Researchers then looked back at the parent concerns.
The parents who already had one child with autism proved particularly adept at spotting the early signs of autism. Overall, their concerns at 12 months accurately predicted an eventual autism diagnosis. This was true even earlier – at 6 months – for concerns regarding sensory difficulties (unusual sensitive to sounds, light or touch). Concerns about language and sociability tended to appear later – between 12 and 15 months of age.
The researchers urge both parents and physicians to take such concerns seriously and seek further evaluations and, if needed, early intervention therapies. "Parents can play a critical role in implementing these interventions by learning how to encourage social interaction in everyday caregiving and play activities," says lead study author Lori Sacrey, also at the University of Alberta and Glenrose Rehabilitation Hospital.
“Our study argues for a renewed emphasis on parents' concerns early in life," Dr. Sacrey concludes. "Where interventions are concerned, the earlier you can start, the better … to address early developmental difficulties that can ultimately enhance skill development and improve outcomes.”
Even in the absence of parent concerns, it’s important to fully evaluate all younger siblings of children with autism - given their high risk for the disorder, adds developmental pediatrician Paul Wang, Autism Speaks head of medical research. For instance, fewer than half of the parents whose children were diagnosed with autism had expressed concerns about social difficulties. “This finding shows that signs of autism can be so subtle that even experienced parents don’t notice,” says Dr. Wang, who was not involved in the study.
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