A team of researchers at the West Lafayette, Ind.-based Purdue University is embarking on a five-year, long-distance study on the prospective surveillance of autism symptom emergence in high-risk infants, which could ultimately inform earlier, more targeted therapies.
Bridgette Tonnsen, PhD, an assistant professor of clinical psychology at Purdue University, specializes in autism in high-risk infants, like those with fragile X and other neurogenetic syndromes. About half of all boys with fragile X meet the criteria for autism.
"While we have made a lot of progress in autism as far as understanding what the symptoms look like, and how to treat and support families, we are still lacking reliable markers of autism before the first year," Dr. Tonnsen said. "The brain changes rapidly during the first year of life, so if we are not detecting children until they are three or four we are missing a great opportunity to support their development. We certainly don't want to rush a diagnosis, but having some pre-diagnostic interventions could significantly help these children for the long-term."
Because the study hones in on rare disorders — like fragile X syndrome — a telehealth approach will enable children from across the U.S. to participate in the study and allow for their development to be evaluated remotely. Dr. Tonnsen also plans to study children with Angelman syndrome who also often face an increased risk for autism.
Participating families will be given a research kit and training on how to complete activities typically conducted in a lab setting, like monitoring heart rate and administering eye movement tasks. The study will initially work with families in the West Lafayette area to evaluate the technology before it opens up to families across the country for home-based telehealth.