Although increasing evidence shows that children with autism spectrum disorder (ASD) can be accurately identified during their second year of life, the average age of diagnosis in both Tennessee and across the country remains well above 4 years of age.
One major contributing factor to delayed identification relates to challenges accessing diagnostic clinics and autism experts, as many families face long waiting periods for specialty clinics as well as geographic and travel burdens. These barriers can leave the families of children with a suspected diagnosis of autism in the dark for months or more than a year, delaying access to early interventions that can dramatically influence development.
A new Vanderbilt University Medical Center study funded by the National Institute of Mental Health (NIMH) hopes to combat these barriers by creating tools to make a remote diagnosis of autism using telemedicine. Designed to be quickly deployed during pediatric health care visits, typically for children under 3, these tools will be tested as part of initial consultations lasting less than an hour rather than the traditional, in-person evaluations at specialty clinics, which could take four or more hours.
If successful, these telemedicine consultations could dramatically reduce wait periods and allow some families to receive accurate answers regarding their child’s development within their medical home.
“Pediatricians will often screen children and refer them to medical centers that have challenging wait periods. It’s not uncommon across the country to wait six to 12 months or longer for an initial evaluation of your child,” said Zachary Warren, PhD, executive director of the Vanderbilt Kennedy Center’s Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) and a lead investigator for the study.
“It’s stressful and, frankly, unacceptable for parents to hear, ‘We think your child may have a neurodevelopmental disability with lifespan consequences that would benefit dramatically from early intervention, but we can’t give you a definitive answer for months or a year.’”
Warren and his team of Vanderbilt researchers and clinicians, which includes TRIAD Director A. Pablo Juárez and Amy Weitlauf, PhD, have tested teleconsultations for remote diagnoses of ASD in the past, but their method required a well-trained paraprofessional be onsite at the remote clinic to lead the child through tasks designed to elicit the behaviors they needed to observe. Although this method accurately identified 60-70 percent of children with autism and ruled out the diagnosis for others, having a specially trained provider required more resources, which is one of the barriers contributing to long wait periods.
The two assessment tools currently being studied were designed to be low-cost, brief and easy to understand, which could allow a professional at VUMC to coach a child’s caregivers through the tasks instead of relying on another trained professional.
“When thinking about autism risk in young children, we try to observe behaviors within some simple categories. These categories translate into tasks that we’re hoping parents can do with their child while we observe,” said Warren. “We get valuable information through something as simple as telling a parent to blow bubbles, then to hand the jar to their child to see how the child responds.”
Other common tasks include trying to get a child’s attention by calling his name, rolling a ball back and forth or having the child play with a teddy bear.
The study will be completed in two phases, beginning with a several-month feedback period with families to adapt the tools before putting them to use. Stage two of the study will involve mimicking the telemedicine visits, with patients and their families coming to the clinic and teleconsulting with a provider who is on another floor of the facility. Families will then immediately receive the “gold standard,” full, in-person evaluations with separate blinded providers to test the accuracy of the results and gather feedback on the process.
The study seeks to enroll 150 patients over a two-year period.
“These hour-long consultations will not be able to make a definitive diagnosis for all children, but they can help with the triage process. Some profiles of autism in young children are much easier to identify,” said Warren.
