Many parents and clinicians are in a bind between conflicting recommendations about autism. Newly issued recommendations by the U.S. Preventive Services Task Force (USPTSF) suggest that current evidence is not strong enough to justify universal screening for the condition in young children. The American Academy of Pediatrics takes an opposite stance and supports such screenings— typically a structured parental survey and short interview about a child’s behavior — for toddlers at 18 and 24 months of age.
How are autism experts weighing in about this conflict? Two experts from the Center for Autism Research at The Children’s Hospital of Philadelphia, David Mandell, ScD, the center’s associate director, and Juhi Pandey, PhD, a pediatric neuropsychologist, participated in a Medscape Q&A to answer many key questions. In their in-depth conversation with the publication, Dr. Mandell and Dr. Pandey discussed the role of early autism screening compared to comprehensive clinical evaluation, as well as the value of early intervention for children who show signs of developmental delay on a screening.
A few highlights follow below:
Why did the USPSTF not endorse universal screening?
Dr. Mandell and Dr. Pandey pointed out that the task force’s decision hinged on the lack of a very specific piece of evidence. “
They agree that we have screening tools that can identify kids with autism. They agree that the bulk of the evidence suggests that treatment is effective in improving outcomes for children with autism,” Dr. Mandell said. “They're saying that no single study has combined those two things. I think that's a really high bar, a really expensive bar, and probably an unnecessary bar.”
Dr. Pandey added: “A better marker to assess the value of a screening tool is to determine whether we are identifying the right kids who require further evaluation.”
What do clinicians need to know about whether to screen young children for autism?
“What I would tell physicians is that the USPSTF says screening identifies autism,” Dr. Mandell said, even if no studies yet directly show better treatment outcomes for children than for children identified through clinical referral without screening. “If you believe it's important to identify autism in these kids early, you should be using those validated screening tools.”
Why might routine screenings make a difference, compared to using clinical judgment based on children’s behavior?
In a typical primary care appointment, providers have a hard time getting an accurate and comprehensive measure of a child’s social and psychological well-being, Dr. Mandell noted. They rely on parents’ reporting about their children’s behavior.
“A lot of kids are shy around strangers, and so how they act in the office is not how they act when they're at home or in the community,” Dr. Mandell said. “If they've been waiting 45 minutes in the office, they're probably going to be bouncing off the walls, too. So that's probably not an accurate assessment of their well-being. These screeners are critical because they give physicians information that they otherwise wouldn't have and don't have a way to collect during that very brief interaction with the child.”
Further, Dr. Pandey noted, routine, scheduled screening at specific ages reduces the potential that a clinician’s or parent’s unconscious biases could cause them to miss signs of autism or other delay.
“They develop over time and appear more subtle and more severe at different stages in development, and that varies by child,” she said. “The symptoms that we are talking about with autism are not as homogenous as we once thought. They are very heterogeneous, so you do need that structured screener to help you identify those cases. The office visit just isn't enough.”
Is access to follow-up evaluation and therapy a problem, or reason not to conduct screenings?
Many families face challenges with access to a comprehensive clinical evaluation by a developmental pediatrician, or other autism specialist, who can provide a diagnosis of autism or other developmental condition, Dr. Mandell explained. Wait times can be long, so parents of children who receive a positive result on a simple pediatrician’s-office screening may be left waiting with their child undiagnosed for many months.
“There's another type of access that might be equally or more important than that kind of access, and that's access to early intervention services,” Dr. Mandell said. “All 50 states participate in the Individual With Disabilities Education Act (IDEA) Part C, which mandates that for any child referred to the program, the state must provide an evaluation and services if warranted within a relatively short period.”
What should pediatricians and parents do when a child has a positive screening result? “
What we strongly encourage physicians to tell families, and what I strongly encourage families to do, is to pursue both lines concurrently: Get yourself on a waiting list for an autism specialist, but also start getting the early intervention services to which your child is entitled,” Dr. Mandell said.
A study in Pediatrics of the most widely used early screening tool showed that, while only about half of children with a positive screening result went on to get an autism diagnosis, almost all of the screened-positive children had some form of developmental delay that warranted intervention.
To read more of the commentary from Dr. Mandell and Dr. Pandey about early screening, visit the Medscape article here (free registration may be required).
To learn more about autism research at CHOP, visit the Center for Autism Research website.