Doctors frequently ignore parents’ concerns about signs of autism in their young children, according to a new study. The research, published in the Journal Pediatrics, found that passive or reassuring responses by healthcare providers to parents’ worries led to a three-year delay in diagnosis.
According to the study, signs of autism can appear before a child is 2 years old. Subtle differences in a baby’s development – a lack of eye contact, inability to grasp objects at 6 months, not smiling back when smiled at, or not responding to a familiar voice – may trigger parents’ concerns.
“We know that early identification of autism spectrum disorder (ASD) is beneficial to children and their families,” lead author Katherine Zuckerman, MD, MPH, a pediatrician at Doembecher Children’s Hospital at Oregon Health and Sciences University, said in a news release. “Unfortunately, many families experience long delays between when they first have concerns and when their child is diagnosed with ASD.”
Zuckerman told MedPage Today that as a pediatrician she had talked to many parents of children with autism who told her they didn’t take action because their child’s primary care doctor told them to “wait and see.” Added Zuckerman, “I was really interested to see what the consequences were of this ‘wait and see’ approach.”
For the study, Zuckerman and her colleagues used data from the 2011 Survey of Pathways to Diagnosis and Services to examine the experiences of 1,420 children with ASD. They compared this information with the experiences of 2,098 children with nonspecific intellectual disability/developmental delay (ID/DD).
The researchers focused on three specific dates for each child: the date the parents first expressed their concerns; the date they first mentioned those concerns to a doctor; and the date the child was diagnosed. They also noted what the parents recalled about the healthcare provider’s response.
The study found that parents of children with ASD first become concerned about their children’s development when they reached the age of 2, and first discussed their worries with healthcare professionals when their child was around 2.3 years old. The parents of ID/DD children became concerned when their child was 3 and reported their concerns at 3.2 years.
Findings also showed that the children who were ultimately diagnosed with ASD were 14 percent less likely than kids with ID/DD to have had doctors or other healthcare providers recommend additional action such as seeing a specialist or ordering developmental tests. Parents of children with ASD were 30 percent more likely to have their healthcare provider give such reassuring responses as “the child may outgrow it,” or “it’s too early to tell if anything is wrong,” or “the child’s behavior was normal.”
According to study results, providers who were more passive in their responses waited longer – as much as two years – to diagnose ASD. Overall, children were not diagnosed with ASD until they were approximately 5 years of age, an almost three-year delay from when parents first voiced their concerns.
Zuckerman told NPR that the study points to the need to get resources to physicians so that they can recognize signs of trouble. “We need to give them the skills they need so they can identify kids earlier. We screen for blood pressure in kids and for vision,” she said. “There’s no reason we can’t screen for autism.”
