Most children with autism get diagnosed around age 5, when they start school. But signs of the developmental disorder may be seen as early as 1 year old.
Yet even if a parent notices problems making eye contact or other early signs of autism, some doctors still dismiss those concerns, a study finds, saying the child will "grow out of it." That can delay diagnosis and a child's access to therapy.
"Autism should be something that primary care pediatricians are really comfortable with, like asthma or ADHD, but it's not," says lead researcher Katharine Zuckerman, a pediatrician at Oregon Health & Science University, whose study was published Tuesday in The Journal of Pediatrics. "If you see a general pediatrician like me, I can't actually diagnose your child with autism."
Diagnosing autism often starts when parents notice subtle differences in their baby's development. The child might not make eye contact as much as other babies do, or he might not be grasping objects at 6 months. Other early signs include not smiling when smiled at, or not responding to a familiar voice.
To get a better sense of how children with autism get delayed on the road to diagnosis, Zuckerman looked at the Centers for Disease Control's Survey of Pathways to Diagnosis and Services, which includes detailed data about 1,420 children between ages 6 and 17 with autism. She documented three significant dates each child: the date parents first worried; the date they first mentioned their concerns to a physician; and the date the child was diagnosed. She also noted what the parents recalled about the physician's response to their concerns.
Some doctors called for further tests or referred parents to a specialist, while others took no action other than reassuring the parents that their child was normal or it was too early to tell if anything was wrong.
Zuckerman compared the information for children who were eventually diagnosed with an autism spectrum disorder to children with an intellectual disability or developmental delay, two other intellectual problems that first show up in early childhood. About 14 percent more of the children with an autism spectrum disorder received a passive response from the health care practitioner, and were diagnosed about three years later than the children with other intellectual problems.
So what's delaying the pediatricians? Rebecca Landa, the director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute, says there are a number of reasons why health care practitioners don't always jump at the first mention of autism. First, many parents with young children tend to worry over minor problems. Health care practitioners are listening for certain words, and if the parents don't seem particularly alarmed, it's easy to dismiss their concerns.
And even if parents are persistent, autism is hard to diagnose. The symptoms are subtle, particularly in young children. "People expect that autism [in infancy] is going to look like autism in infancy, and that's not what happens." explains Landa. A baby who sits unsteadily at 6 months may have autism, or he might just be a slow sitter. "Babies do weird things," says Landa.
But perhaps the biggest problem isn't that it's hard to spot a young child with autism, but that most doctors and other health care practitioners aren't trained to identify those early signs.
Researchers knew far less about autism when most doctors practicing today studied medicine. Unless a pediatrician spent her or his residency in a field like neurodevelopmental pediatrics, they wouldn't have been trained to diagnose autism.
The children in the study were diagnosed around age 5, the average age of autism spectrum diagnosis in the U.S. But Zuckerman says that children could be diagnosed much earlier. And an earlier diagnosis means that children and parents can get help learning techniques to make life with autism a little more manageable a little sooner.
If anything, 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," says Zuckerman.
The American Academy of Pediatrics recommends that pediatricians screen children at their 18-month checkup and again when the child is between 24 and 30 months old. But it will take a few years for this practice to truly take root.
"We screen for blood pressure in kids and for vision," says Zuckerman. "There's no reason we can't screen for autism."