Ongoing NIH Study Leveraged to Understand the Impact of the COVID-19 Pandemic on Autistic Youth

Traditionally, clinicians make a diagnosis of autism using scientifically validated behavioral assessment tools that rely on observing child behaviors and parent report. Autism manifests itself in a wide range (or “spectrum”) of characteristics, and there is no “lab test” to easily make a diagnosis. Parents’ concerns are shared using questionnaires, which research has shown favor highly educated people who speak English as a first language. Biological “markers” would make diagnosis less subjective, open doors to more equitable access to screening, and help make decisions about interventions and progress less dependent on subjective questionnaires.  

To help find a solution, the National Institutes of Health (NIH) has invested $60 million in the Autism Biomarkers Consortium for Clinical Trials (ABC-CT). The ABC-CT, which is led by Yale and also includes the Duke Center for Autism, Harvard, UCLA, and the University of Washington, has enrolled hundreds of children and adolescents in this longitudinal, multisite study, with the goal of making scientific advancements and finding autism biomarkers that track brain function. The ABC-CT began in 2015 and was renewed in 2020, which allowed the team to invite back families who participated in the first round of the study. This presented a unique opportunity to learn about the impacts of the COVID-19 pandemic on autistic and neurotypical youths.

Marika Coffman, PhD, assistant professor of psychiatry and behavioral sciences and the clinical director for the Duke ABC-CT site, has been leading the efforts to understand the impact of the pandemic. She found that although both neurotypical and autistic youths had many of the same types of stressful experiences as a result of the COVID-19 pandemic, autistic youths experienced more distress, and the pandemic had a greater social impact compared to their nonautistic peers, according to parents. Future work in understanding how the COVID-19 pandemic affected autistic youths will examine how access to interventions changed, and what aspects of family life may have been helpful in weathering the impact of the pandemic. Results from this work will guide the development of effective interventions for autistic youth during times of stress.