Before I had children, a coworker told me that one of the best parts of being a parent is learning to expect the unexpected. Indeed, parenting has taught me how to be flexible and gifted me with spontaneous joys. But uncertainty is also one of the most stressful parts of raising kids.
At some point or another, most of us worry about whether our children are developing in typical, healthy ways. That’s partly because there is often a wide range of “typical,” whether in crawling, jumping, or reading.
But sometimes we worry because delays and diagnoses aren’t clear-cut or are difficult to recognize. That is often the case for autism spectrum disorders (ASD). Though ASD is generally associated with atypical social interactions, its features look and feel different for different children, and no single symptom confirms a diagnosis. For example, speech delays can be a sign of ASD, but they are also a normal part of development for many non-autistic children.
Fortunately, researchers are developing quick and easy tools to help parents identify the likelihood that a child has ASD. That’s a big win for everyone, because earlier is better with autism diagnosis and intervention — and no one is in a better position to recognize children’s behavior patterns than their families.
What is autism?
Autism spectrum disorders (ASD) are marked by challenges with social interaction and communication, like difficulty making eye contact and reading social cues. Some autistic people have little or no ability to communicate with words or are sensitive to loud noises or certain textures. Julia, a Sesame Street Muppet with autism who was introduced in 2017, displays some of these behaviors, as well as characteristic repetitive arm-flapping motions and self-soothing behaviors.
ASD affects one out of every 68 American children, so most of us probably know someone affected, but we may not realize it. It’s important that we all learn to recognize the early signs, because intervention during the toddler years is very effective. Training in social skills and positive parenting can have long-term benefits for ASD children’s social, emotional, and cognitive development, and can even lead to changes in the brain if provided during the period when the brain is most flexible: before age 3.
“We used to say you can’t diagnose autism before age 3, but now we can diagnose as early as 18 months in many children and even see signs in the first 12 months,” explains Allison Wainer, a psychologist at Rush Medical College’s Autism Assessment, Research, Treatment and Services Center in Chicago. Studies of younger siblings of autistic children have allowed researchers to track high-risk children over time and identify the early behaviors that do and don’t predict who will eventually develop ASD.
Getting screened, getting support
Identifying whether your child has signs of autism can be tricky, but doctors are making it easier than ever with screening surveys, some of which take only a few minutes to complete.
A new one called the Psychological Development Questionnaire (PDQ-1) is a parent survey with ten simple questions and an accuracy rate of 88%. Parents answer yes, no, or sometimes for questions such as whether the child points or gestures to communicate, makes eye contact, responds to his or her name, or engages in repetitive stimulation behaviors like rocking.
If the total score falls below a specific cut-off point, you should talk to your pediatrician about getting a full evaluation — because tools like the PDQ are only for initial screening and do not confirm a diagnosis. The survey is not yet widely available, but Walter Zahorodny, one of the developers, hopes pediatricians will pass it on to parents in efforts to screen all children between ages 1.5 and 3. The American Academy of Pediatrics has recommended doctors provide universal screening, but experts agree that hasn’t happened, and studies show that low-income and minority children are less likely than their peers to get screened and diagnosed.
Dr. Wainer encourages parents to be aware of ASD symptoms and to bring any concerns to their pediatrician. “You know your child better than anyone else,” she emphasizes, whereas a doctor usually only gets about 20 minutes at a time. Be prepared to share your specific observations and examples, she says.
Zahorodny adds that parents can also reach out directly to the early intervention program in their state to ask for an independent evaluation. Early intervention is provided in every state and at no cost to families. There is no real downside to getting evaluated, many doctors believe, and a huge upside: Early identification can lead to early intervention and long-term benefits for your child.