One in 68 children show symptoms of autism spectrum disorder by the time they reach 8 years of age, according to statistics released last week by Centers for Disease Control. The meaning of these numbers is highlighted for me as I hear more and more stories from friends and acquaintances whose families include a member with ASD.
As an autism researcher, I am asked many questions about autism for which we continue to lack definitive answers, including, “Why is autism increasing so much?” But I welcome these hard questions, because they open conversations about some of the important progress we have made in understanding this neurodevelopmental disorder.
One important advance is much more knowledge of the early risk markers for ASD. This has led to improvements in our ability to identify toddlers with ASD. Through early identification, we increase the chances that these toddlers and their families will have access to early intervention programs.
Although good intervention programs at all ages can improve functioning for individuals with ASD, the most dramatic improvements have been seen among toddlers and preschoolers who participate in intensive intervention programs. Improvements include better language and cognitive skills and fewer problem behaviors, which are associated in turn with better school performance and a greater likelihood of independent living as adults. For these reasons, early identification of children with ASD is a priority for the Centers for Disease Control and the American Academy of Pediatrics, among other organizations.
Through the Program in Early Autism Research, Leadership and Service at UNC-Chapel Hill, my colleagues and I are examining the risk markers for ASD in infants and young toddlers.
We previously developed a research version of a questionnaire for parents of 12-month-olds that identifies about half of the children who will be diagnosed with ASD as preschoolers. Many parents of children eventually diagnosed with ASD express concerns about their child’s development by the child’s first birthday, but the risk markers at this age are often subtle. Thus, both parents and physicians are hard-pressed to know how seriously to take the concerns in the absence of a good screening tool.
Our questionnaire, the First Year Inventory, provides information on whether a 12-month-old is at high risk for ASD or other developmental problems sharing some of the same early risk markers.
This questionnaire also has made it possible for our team to begin evaluating interventions with 1-year-olds and their parents prior to the time that autism symptoms have fully emerged. Our hope is that starting appropriate interventions at such a young age will be especially effective because the brains of infants and young toddlers are growing rapidly and are very “plastic,” meaning that their future brain growth can be altered by their early experiences.
This month, 40,000 families in North Carolina will be asked to assist in the very early identification of children at risk for autism and other developmental problems. These are families who have infants between the ages of 9 and 16 months, as identified through public birth records in our state.
Parents will receive a postcard early this month inviting them to participate in the North Carolina Developmental Survey online or by mail. Our PEARLS team is doing this survey to improve our parent questionnaire and adapt it for a broader age range of infants. Through these changes, we aim to make the questionnaire useful for pediatricians and other community professionals who see infants and young toddlers and talk with parents about their child’s development. The more responses we receive to the North Carolina Child Development Survey, the more confident we can be about what behaviors are typical for infants in this age range, and what behaviors best identify infants likely to have later developmental problems, including ASD.
April is Autism Awareness Month. Without question, the awareness of autism is at an all time high. As a society, we face a major public health challenge of how we will respond to the increasing prevalence of ASD. Early detection and early intervention are important components of a comprehensive approach.
North Carolina is at the forefront in our country in lowering the age at which ASD is diagnosed, but the average age of diagnosis in our state is still a relatively old 46 months. Thus, many children are being diagnosed too late to participate in early intervention. We can do better. The North Carolina Child Development Survey provides an opportunity for North Carolina parents to help meet this challenge.
Linda R. Watson is a clinical associate professor of speech-language pathology in the Division of Speech and Hearing Sciences, Department of Allied Health Sciences at the UNC-Chapel Hill School of Medicine.