Methodological challenges and opportunities when studying the course of autism

Lay Abstract

Longitudinal research has been critical to understand the life course of people with autism, including factors which increase the probability of an autism diagnosis, the emergence of early markers, co-occurring psychiatric conditions, predication of future educational and support needs across childhood and adulthood, and understanding what makes each person unique and contributes to the well-being of autistic people and their families. However, these studies take time, patience, investment of families and individuals, scientists and are challenging to all involved. This article will outline some of the issues that have occurred in the past and provide potential solutions to improve the quality of these studies to both the scientific and autistic communities. They include sample and measurement diversity, retention, outcome measures, analysis, and funding considerations. This understanding of the field is important for both scientific research and community engagement in the studies that include the autistic community.