Collaborative ECHO research led by Elizabeth Kaplan-Kahn, PhD, Kristen Lyall, ScD of the A.J. Drexel Autism Institute at Drexel University and Heather Volk, PhD, MPH of the Bloomberg School of Public Health at Johns Hopkins University investigates the factors that influence the overall health and well-being of people on the autism spectrum. This research, titled “Describing Multidomain Health Outcomes in Autistic Children in the ECHO Program,” is published in the Journal of the American Academy of Child and Adolescent Psychiatry.
Approximately 3% of children in the United States have a diagnosis of autism spectrum disorder (or autism). A large proportion of autism research focuses on understanding the factors that influence the development of autistic traits. However, many people on the autism spectrum report that they would rather prioritize research into the factors that influence their overall health and well-being. This study addressed that priority by investigating the physical, emotional, and overall health outcomes of children on the autism spectrum.
The study included over 4,500 children and adolescents at 29 ECHO research sites across the United States, including 286 participants with autism, with participants varying in age from 5 to 20 years old. The research team conducted an initial analysis on the 4,511 participants by comparing data on their health outcomes and demographic characteristics. They then used a subsample of 1,809 participants, of which 116 were autistic, to group children with similar physical health, emotional health, and overall well-being outcomes into one of three categories, “positive health,” “poorer health,” and “mixed health.”
These profiles were categorized based on data from the research team’s primary outcome measures—multiple Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health scores, the Child Behavior Checklist (CBCL) Dysregulation score, the Social Responsiveness Scale, Second Edition (SRS-2), and standardized Body Mass Index (BMI). These measures evaluated participants’ peer relations, life satisfaction, behavior dysregulation, sleep disturbances, physical activity, etc. The three profiles of participants were then further analyzed to study differences in health outcomes between children on the autism spectrum to non-autistic children.
The study results indicate that autistic children are at higher risk than non-autistic children for poorer health outcomes indicated by lowest scores in Global Health and highest dysregulation scores (e.g. attention problems, aggressive behavior, and anxious-depressive symptoms). However, there is variability in health outcomes within autistic youth as shown by a group of autistic participants who showed high scores on positive health outcomes across domains. Additionally, compared to non-autistic children, more autistic children were born prematurely, had diagnoses of intellectual disability and ADHD, and had a sibling with autism.
“The results of this study offer a glimpse into the range of emotional, physical, and overall health outcomes for children on the autism spectrum,” Dr. Kaplan-Kahn said. “A deeper understanding of the range of health outcomes children with autism experience, and the factors that can affect these outcomes, may help families and practitioners identify and target areas for support or intervention.”
Future work may focus on understanding the factors that influence poor or positive health for children with autism and how those factors change over time. This work might identify opportunities to support these children and promote positive health outcomes.