“Does your child point with one finger to show you something interesting, such as an airplane in the sky, or a big truck in the road?”
An array of questions like this one, asked by a pediatrician or other professional to parents of toddlers, makes up one of the best standardized measures that can detect possible signs of autism early—the first step toward early intervention with services to help kids on the spectrum develop strong social and other skills they need to thrive in a challenging world.
But individual parents aren’t the only ones who should be concerned about early screenings. When you add up the entire population of individual parents and pediatricians learning, or not, about what to look for, there is a combined big-picture impact. National trends in who gets screened for autism and when they do are important public health considerations that policymakers and leaders across social and health systems need to address, for the good of all children and families across the population. And in that realm there are still a lot of unanswered questions.
That’s where the A.J. Drexel Autism Institute comes in. As the first autism research center in the U.S. with a focus on public health science, Drexel’s institute is involved in a slew of recently begun research projects aiming to improve early detection and intervention for all children in the population. Diana Robins, PhD, joined the institute in 2014 to lead this research program area in early detection and intervention.
Robins has helped us compile this primer on what parents need to know about early autism screening and how this information relates to the bigger picture in public health.
Universal Screening for Autism
- Parents need to know that all toddlers should receive autism-specific screening at the ages of 18 and 24 months, according to evidence-based recommendations of the American Academy of Pediatrics.
- Public health challenges include getting that universal screening to happen in the real world. Currently, fewer than half of all children in the U.S. receive this screening on time, and the average age of autism diagnosis is four years or older. “If you implement universal screening and refer all who test positively as at risk, we can get earlier diagnosis on average by two years,” says Robins.
- Parents need to know that diagnosing kids with autism and other developmental disabilities early is the best possible way to ensure they get access to early intervention services when they are most effective, early in a child’s development.
- Public health challenges include developing and sharing screening tools to detect early signs of autism and other developmental challenges that are effective, standardized and widely available to practitioners who see young children. Fortunately, there has been a lot of progress in developing tools and documenting evidence that they work. The most widely used tool for children 16-30 months old is the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up (M-CHAT-R/F). Robins spearheaded the development and validation of this tool. Children who show risk on the 2-stage M-CHAT-R/F have a 95 percent chance of not being typically developing, and needing early intervention, according to data on the tool’s effectiveness.
Recognizing and Reacting to Early Signs of Autism
- Parents need to know that toddlers are so early in their social and language development that most signs of autism aren’t yet apparent in the ways that they manifest in older children. For example, repetitive behavior is a sign of autism that is commonly identified in older children, but it’s harder to spot whether a toddler’s repetitive activities are unusual or within the range of typical toddler behavior. The type of behaviors that could signal risk for autism or similar developmental disability include not pointing at objects of interest, or not looking and responding when a caregiver points; not looking the caregiver in the eye; and having strong reactions (screaming or crying) in response to everyday noises such as vacuum cleaners or loud music.
- Parents need to know that the screening process for toddlers, when a pediatrician or other professional uses a tool such as the M-CHAT, involves answering a series of questions about the child’s behavior, especially social communication as in the examples described above.
- Parents need to know that a checklist of behavior on its own isn’t enough to determine which kids are at risk for autism. Pediatricians will integrate the results from the screening tool with behavioral observation, discussion with parents about possible developmental concerns and the child’s medical and developmental history. Additionally, Robins noted, “no screening tool will be perfect. Parents who have concerns should request referral even if the screening does not indicate risk.”
- Parents need to know that it’s not only normal, but recommended, for a pediatrician to refer a child to early intervention services if he or she receives a positive screening result suggesting they are at risk for autism—even without a specific diagnosis of autism or another developmental disorder. Getting a diagnosis is a separate process from enrolling in early intervention services—and diagnostic appointments can come with long wait times. In the meantime, early intervention can help at-risk kids (even those who turn out not to have a diagnosable disability).
- Public health challenges include finding the best possible ways to deliver early screenings—what are the optimal ages for screening, and how can screening tools and training be improved to help physicians get more accurate results and refer children for services when appropriate? These broad questions are among those being addressed in a new study Robins is initiating at the A.J. Drexel Autism Institute. Drexel is the lead site of this multi-site study funded by the Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD) that will screen 12,000 toddlers in three regions of the country using the M-CHAT-R/F and other tools, and, in the process, examine ways screening can be improved.
Unequal Access to Screening
Public health challenges include disparities in which groups receive early screening and diagnosis more often than others in the population. Children who are minorities or whose families are low-income tend to get diagnosed at a later average age. Identifying factors associated with disparities is another aim of Robins’ NICHD-funded study of early intervention.
- Public health solutions involve finding more ways to reach underserved minority and low-income communities with opportunities for early screening, in addition to offering screening in the pediatrician’s office. This is one focus of a multi-site research study that Drexel’s Autism Institute is part of. Headed by Florida State University’s Amy Weatherby, PhD, the project “Mobilizing Community Systems to Engage Families in Early ASD Detection & Services” was funded by the National Institute of Mental Health to test other venues for early screening including black churches and the federally funded Women, Infants and Children nutrition program. Similarly, Drexel’s autism institute is also working on a pilot study funded by Pennsylvania’s CURE program to explore screening in childcare centers—bringing screening to children outside the doctor’s office to be sure they have access to evaluation and intervention when needed.
- Parents need to know that they are the experts on their children’s behavior. Parents who have concerns about their children’s social or psychological development should raise those concerns with their doctors and seek a second opinion if they feel the concerns aren’t addressed.
- Public health challenges are the big questions whose answers can make our society stronger and help all children thrive. How can we ensure that all children have access to the best possible services to help them develop to their fullest potential? Getting the right on-time screenings, early diagnosis and early intervention to those who need it across the entire population is the goal.
Ways to Get Involved
Parents in the Philadelphia region interested in volunteering for practice testing, which helps train the staff on the research projects, can contact the A.J. Drexel Autism Institute at firstname.lastname@example.org or 215.571.4824 or 215.571.4825.
Parents also can encourage their pediatricians to participate in one of Drexel’s screening studies. Please share this flyer with your pediatrician and ask them to contact the A.J. Drexel Autism Institute for more information.
Community partners, including pediatricians, family practice physicians, nurse-practitioners who see toddlers, staff from public agencies such as WIC, Early Head Start, child care centers and faith-based organizations interested in joining a screening study can contact the A.J. Drexel Autism Institute at email@example.com or 215.571.4824 or 215.571.4825.
Members of the news media interested in interviewing Diana Robins or learning more about ongoing research at the A.J. Drexel Autism Institute should contact Rachel Ewing, 215.895.2614 or firstname.lastname@example.org.