What Should I Do if I Think My Child Has Autism?

Autism spectrum disorder affects about one in 54 children. An early diagnosis can mean quicker access to the medical, behavioral and social services that a child may need.

Credit...Lilli Carré

Tiffany Lewis didn’t need a doctor to tell her that her son’s speech was delayed. As a special education tutor, she knew he should have been able to say more than two or three words at 18 months. He couldn’t say “Mama” or anything close to it. When a pediatrician told her that toddlers at his age typically used dozens of words, she became anxious.

The pediatrician referred Lewis to a speech therapist and a developmental pediatrician, but the first available appointment was months away.

Her son, Cooper, was finally evaluated at 2 years old. He lagged behind at least 90 percent of children his age on two key areas of communication: articulation of his own thoughts and understanding what people said to him. He soon began working with a speech therapist and was re-evaluated at 2 ½ years old. He was diagnosed with autism spectrum disorder, or A.S.D.

Autism researchers agree: The earlier children can be diagnosed, the more effective their treatment options can be. Early diagnosis can mean quicker access to the medical, behavioral and social services that a child may need. And studies have shown that early intervention can lead to an improved quality of life for that child in the future, especially when it comes to academics and relationships.

In the United States, the Centers for Disease Control and Prevention reports that A.S.D. affects about one in 54 children in the United States, and the average age of diagnosis is just over 4 years old, though many experts would like that age to be younger. For now, “early diagnosis is mostly talking about 2-year-olds,” said Catherine Lord, Ph.D., a clinical psychologist who has been studying autism for 50 years and teaches psychiatry at the David Geffen School of Medicine at U.C.L.A.

Many parents have searched online using phrases like “18-month-old not looking at me” or “toddler not talking and autism.” This is OK, but if you are truly concerned about your child having A.S.D, it’s advised that you go see a doctor early on. “If you’re worried, don’t keep it to yourself and don’t ask your friends on Facebook,” said Susan L. Hyman, M.D., a developmental pediatrician and a professor at the University of Rochester Medical Center who co-wrote the American Academy of Pediatrics’ latest clinical report on A.S.D.

Below are commonly asked questions about autism and early intervention:

The prevalence of A.S.D. in children has increased over time, according to the American Academy of Pediatrics. Early intervention can be an effective tool in development, research shows. The power of early intervention comes from the brain’s neuroplasticity, or ability to change. Neuroplasticity is what allows a person to learn and retain new skills. So the earlier children can begin receiving therapies, the better the chance they have of gaining the skills needed to navigate certain experiences, which can lead to a better quality of life.

“In early intervention, children learn how to learn,” said Rebecca Landa, Ph.D., the founder and executive director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore. Depending on the child, this could mean learning how to play with toys, take turns, solve problems or avoid tantrums. “As children learn how to do these things, the way that people interact with them and talk to them changes,” Dr. Landa said.

Those therapies can pave the way to more valuable life experiences, like attending birthday parties, which kids with autism often miss out on, Dr. Lord said. “Their lack of experiences is what hurts them,” she said. For example, autistic children may not appear interested in an activity so people may stop talking to them or may stop including them.

Some children with A.S.D. will need more interventions than others. And finding the therapies and experts that best suit a child’s needs can be frustrating and time-consuming. But doing so, and early, can have a lasting positive effect, Dr. Landa said.

Symptoms of autism at any age fall into two categories: social communication skills and repetitive behaviors or interests. Symptoms can vary widely in severity and from individual to individual. Because autism is such a broad spectrum, assessments are made by taking multiple criteria into account, including the child’s developmental history and observations of his or her behavior. The child’s set of needs can then be matched to the appropriate set of services.

In young children, there are several key signs. If an 18-month-old child is consistently avoiding eye contact, there’s a good chance that A.S.D. or another neurological disorder is at play. Another sign to look for before age 2 is a lack of social connection and engagement, Dr. Landa said. Pay attention to playtime: Children under 2 who express no interest in sharing or showing toys or insist on lining the toys up instead of playing with them should be evaluated. Another strong indicator in children this age is that they generally don’t respond to their names.

Lewis’s concerns about Cooper were related to language delay. Other early indicators, however, may be less obvious. Repetitive movements, like flapping hands, for example, can be an early sign but on their own may not necessarily point strongly to autism. Combined with other unusual preferences or behaviors, such as persistent walking on tiptoes, however, flapping hands “could be a red flag” in a young child, said Adriana Di Martino, M.D., a pediatric neurologist and founding research director at the Autism Center at the Child Mind Institute in Manhattan.

Spend lots of time with your kid and stay engaged. Join in the activities that he likes. Imitate his play and try adding a new element without forcing him to change what he’s doing. Experiment. Part of standard early intervention is helping parents identify their children’s comfort zone and learn to gently nudge them outside of it. Find out “what your child can tolerate,” Dr. Lord said, “and then push them a little bit.”

Lewis turned to a number of therapies to help her son Cooper continue to develop his communication, motor, and empathy skills — from sports to music to horseback riding. Cooper, who is now 11, is at the top of his class at a private school for children with developmental disabilities. He has an advanced vocabulary and high standardized test scores, said Lewis, who credits those first years of speech and behavioral therapy with her son’s academic progress. “I don’t know where we would be right now if we hadn’t received early intervention,” she said.

“Try not to worry,” Dr. Lord said. Research has found that children who are diagnosed later are likely to have milder symptoms, she said, so they may require fewer or less intense interventions.

Indeed, some children who are diagnosed after age 5 may already have average or above average cognitive and language skills, Dr. Landa said. “For those children in particular, learning has been happening at a typical pace at least in intellectual and language domains, and that is good news.” 

Dr. Di Martino agreed that parents shouldn’t beat themselves up if a diagnosis was missed early on. “It is never too late,” she said.

That said, it can be difficult for some older children to break patterns of behavior and learn new social skills. By the time a diagnosis is made, “they may have developed inflexible ways of thinking or doing things,” Dr. Landa said. Some children may have become rigid in certain routines, for example, like insisting on a specific order to objects or activities and melting down if that order is disrupted. “That could make it hard for them to learn well in school, make and keep friends, for parents to manage their behavior at home, and so forth,” she said. “Some of these problems may have been preventable if intervention had been started early.”

These days Lewis sometimes shares updates about Cooper on Facebook and often finds connections through autism support groups. Parents occasionally will write her with concerns about their own young children and ask her what she thinks they should do. Her advice echoes that of many experts: Don’t feel guilty if you missed some of the signs. Don’t compare yourself with other parents or families. Focus on what your child needs in this moment and what he will need in the future and then “plow forward and find answers.”

Catherine Zuckerman is a writer based in Washington, D.C., whose work has been published in National Geographic, The Washington Post and others.